Noah's Journey

Six

2011-09-21T19:23:00.003-05:00

Somehow summer has disappeared and fall has quietly crept up on me, bringing with it this day once again. 6 years ago today we were given a most precious gift and I will always look on this day with bittersweet memories. It occurred to me today that we have now marked as many birthdays without Noah as we did with him here on earth. Which means that one day very soon we will have spent more days grieving than he lived. I wonder how time can be so harsh...

My little man, I miss you so much and I would give everything to have you here. I will never forget the moment you were born...my heart overflowed with awe and joy. You were beautiful and perfect to me in every way. I was so proud to be your mom.

We sent you balloons today. One blue balloon slipped away as we were getting ready to release them. With disappointment we watched it fly to the heavens, and I couldn't help but think of how your life slipped away so quickly, no matter how I tried to hang on. My selfish heart wants you here with me...I will always long for the life I had with you. But I know you are enjoying a celebration far beyond what I could ever imagine. Happy Birthday precious boy.

Love your mama.

Life Changes

2011-09-19T14:43:00.006-05:00

Much has been happening in our lives these days. We spent a wonderful 2 weeks down in Florida. We were able to do some volunteering again at Give Kids The World, which we loved! And Kailyn was able to deliver all of the items she has been collecting to donate. (More to come about that in another post). After our time spent there, we met my sister and her family in Disney and spent a fabulous 9 days at the parks together. We will be heading back down there in November to do some more volunteering and this time try a short Disney cruise. Yes we love that place, but there is more to the story... For some time now, we have been feeling unsettled. Our lives have felt in this "limbo state" for so long and we feel like there is more that we need to be doing. Noah has inspired us to step out of our comfort zone and give back...to make our lives count for something and leave a legacy we can be proud of. After much thought and prayer...many nights of wondering...and waiting on God for guidance, we have come to a major life decision. And since it went public in the paper here on Friday, it is time that I share it here too...

http://www.gktw.org/news/press/09-08-2011-volunteer-moves-to-help-gktw.asp

http://www.winnipegfreepress.com/breakingnews/family-to-volunteer-at-resort-where-son-got-wish-129938973.html

So many wonderful memories are tied up in GKTW. Our hearts will always be a part of that place. There is much that will still need to fall into place for this vision of ours to become a reality, so the articles may be a bit premature. It is exciting and terrifying all at the same time, and we really don't know how, when or even if it will all fall into place. But the paperwork ball is very slowly rolling and we are trusting in His perfect plan and guidance in all of this. I have much more to share about Kailyn and the passion and generous heart she has developed for GKTW, but I will save that for another day, for that deserves a post dedicated just to her. Noah, your life had a purpose and your legacy lives on. I can only hope to live my life with even half of the courage we saw in you. You are my inspiration. Missing you...

Don't forget to read my last blog post and consider donating to the Children's Wish Foundation Walk for Wishes.

Walk For Wishes

2011-09-12T21:06:00.004-05:00

On Oct 1, 2011, our family will be participating in the Wishmaker Walk for Wishes for the 2nd year, in support of The Children's Wish Foundation of Canada. We had a fantastic time last year with family and friends and are excited to walk again this year. Thousands of Canadians in over one hundred communities will gather together to help create the magic of a wish for children with high-risk, life threatening illnesses. These children are coping with things most of us can only imagine and the wishes they receive provide a ray of hope during a difficult time. The Children’s Wish Foundation of Canada has never refused an eligible child and has granted almost 15,000 wishes! Wish requests continue to increase and they are currently providing 3 wishes a day! I hope you will once again join me and help to create the magic of a wish by supporting my efforts in the Wishmaker Walk for Wishes.

To sponsor me online, just follow this link http://my.e2rm.com/personalPage.aspx?registrationID=1175575 and access my secure fundraising page. You can help The Foundation even more by spreading the word about this exciting event! To encourage others to participate or to sponsor me please pass my website address along. It's easy; just paste the above link into an email. Join us on Oct 1, 2011! Visit The Children’s Wish Foundation website and learn more about how you can create the magic of a wish!

Thanks for your generous support!

This Is Now

2011-08-20T19:42:00.001-05:00

From the heart of a bereaved Mother... This is now
by Unknown

Normal is having tears waiting behind every smile when you realize someone important is missing from all the important events in your family's life.

Normal for me is trying to decide what to take to the cemetery for Birthdays Christmas, Thanksgiving, New Years, Valentine's Day, July 4th and Easter.

Normal is feeling like you know how to act and are more comfortable with a funeral than a wedding or birthday party...yet feeling a stab of pain in your heart when you smell the flowers and see the casket.

Normal is feeling like you can't sit another minute without getting up and screaming, because you just don't like to sit through anything.

Normal is not sleeping very well because a thousand what if's & why didn't I's go through your head constantly.

Normal is reliving that day continuously through your eyes and mind, holding your head to make it go away.

Normal is having the TV on the minute I walk into the house to have noise, because the silence is deafening.

Normal is staring at every child who looks like he is my child's age. And then thinking of the age he would be now and not being able to imagine it. Then wondering why it is even important to imagine it, because it will never happen.

Normal is every happy event in my life always being backed up with sadness lurking close behind, because of the hole in my heart.

Normal is telling the story of your child's death as if it were an everyday, commonplace activity, and then seeing the horror in someone's eyes at how awful it sounds. And yet realizing it has become a part of my "normal".

Normal is each year coming up with the difficult task of how to honor your child's memory and his birthday and survive these days. And trying to find the balloon or flag that fit's the occasion. Happy Birthday? Not really.

Normal is my heart warming and yet sinking at the sight of something special my child loved. Thinking how he would love it, but how he is not here to enjoy it.

Normal is having some people afraid to mention my child.

Normal is making sure that others remember him.

Normal is after the funeral is over everyone else goes on with their lives, but we continue to grieve our loss forever.

Normal is weeks, months, and years after the initial shock, the grieving gets worse sometimes, not better.

Normal is not listening to people compare anything in their life to this loss, unless they too have lost a child. NOTHING. Even if your child is in the remotest part of the earth away from you - it doesn't compare. Losing a parent is horrible, but having to bury your own child is unnatural.

Normal is taking pills, and trying not to cry all day, because I know my mental health depends on it.

Normal is realizing I do cry everyday.

Normal is disliking jokes about death or funerals, bodies being referred to as cadavers, when you know they were once someone's loved one.

Normal is being impatient with everything and everyone, but someone stricken with grief over the loss of your child.

Normal is sitting at the computer crying, sharing how you feel with chat buddies who have also lost a child.

Normal is feeling a common bond with friends on the computer in England, Australia, Canada, the Netherlands and all over the USA, but yet never having met any of them face to face.

Normal is a new friendship with another grieving mother, talking and crying together over our children and our new lives.

Normal is not listening to people make excuses for God. "God may have done this because..." I love God, I know that my child is in heaven, but hearing people trying to think up excuses as to why healthy children were taken from this earth is not appreciated and makes absolutely no sense to this grieving mother.

Normal is being too tired to care if you paid the bills, cleaned the house, did laundry or if there is any food.

Normal is wondering this time whether you are going to say you have three children or two, because you will never see this person again and it is not worth explaining that my child is in heaven. And yet when you say you have two children to avoid that problem, you feel horrible as if you have betrayed your child.

Normal is avoiding McDonald's and Burger King playgrounds because of small, happy children that break your heart when you see them.

Normal is asking God why he took your child's life instead of yours and asking if there even is a God.

Normal is knowing I will never get over this loss, in a day or a million years.

And last of all, Normal is hiding all the things that have become "normal" for you to feel, so that everyone around you will think that you are "normal".

Two Years

2011-07-29T21:38:00.001-05:00

Thank you to those who have remembered our Noah and our family today. The flowers, cookie bouquet and emails were very appreciated and brightened our day.

I have been struggling for a while about what to post here today, as we mark two years of life without Noah. Some days it still completely takes my breath away to think that he is really gone for the rest of my life here. Even after two years the pain is still so present. Time has given salve to the wounds, but they are still there and still so very deep. Many days I need to work to block the memories out, or they can completely overwhelm me. I pick my moments to remember when I can...when I feel strong enough. But sometimes the memories come out of nowhere and still completely take my breath away. With time I am slowly learning how to navigate through those moments.

Today marks two years since the worst day of our lives...the day that changed everything. Every moment of that one day is seared into my memory. I will never forget the fear and terror of the morning as we stood by helplessly, watching the PICU team do everything they could to try and save our son. Or that early afternoon when we knew that everything had been tried and there was nothing more to do but let go...watching his heartbeat disappear on the monitor...the weight of Noah and the coolness of his skin as I held his lifeless body...the stunning rainbow in the sky on that surreal drive home from the hospital. Once again we have been at a bit of a loss as to what to do to mark this day. It doesn't seem right to crawl back into bed, or to simply go about our normal routines. Somehow the day must still be acknowledged. Although today is a reminder of sadness and loss for us, for Noah, it marks a day of rejoicing and freedom...his heavenly birthday. and we can't even begin to imagine the celebration he is having!! I am convinced that he is enjoying all the fabulous goodies that he never tasted on earth (with the yumminess factor infinitely multiplied of course!). So today we chose to celebrate with food and fun, just as Noah would want it. The kids spent the day at day camp and Brad and I enjoyed a lovely breakfast out at Cora's. After day camp, we had a fun family evening out at the movies, topped off with a yummy birthday cake. A visit to Noah's grave with some time to share a few memories completed our evening.

Oh my precious little boy...I would give anything to turn back time for just one more smile. Missing you today and every day. Who knew that such a little man could change so many lives. Today we celebrate your life. A life lived with so much courage and joy...you are my inspiration to be a better person.

Always and forever your "mama".

Till we meet again...

Till we meet again...

Mothers Day

2011-05-08T18:31:00.006-05:00

Mothers Day is a tough day. I think that no matter how many years go by, it will always be one of those days that will always be, well, just plain crappy. Although I love spending the day with my other kids, the void in our family is so much more noticable on a day like today. This year Brad was away in BC on business. But Kailyn & Joshua did what they could to make the day special. I awoke to them creeping in my bedroom, with some rewarmed pancakes they had found in the fridge with fruit and yogurt. Along with that came the traditional homemade cards from school of course. It was very cute and I was touched.

We decided to laze around in bed, skip church (another place I don't particularly enjoy being on mother's day anymore), and instead, head to the cemetery so I could spend the morning with all of my children. We always enjoy seeing what others have left at the grave. I love that there are others out there who care enough to stop by the cemetery. Thank you!! We spent some time cleaning up the grave a bit, and had some fun taking pictures. It turned out to be a beautiful morning in between rain showers.

I miss my little Noah so very very much. I miss having my identity wrapped up in him and being known as "Noah's mom". Oh how I long just to hear him call me "mama" just one more time! I am so very proud that I was given the precious gift of mothering such a beautiful child on this earth. Those years are a treasure to be carried with me always. Miss you buddy.

Always and forever your mama...

18 Months

2011-01-29T21:02:00.001-06:00

It's been exactly 18 months since I held my boy. 1 and 1/2 years...it seems absolutely unbelievable to look at those numbers. How is it even possible that I have lived that long without him????

Some people still ask once in a while how we are doing. Other's have stopped asking altogether...assuming I guess that we must be "over it" by now. Although we will never, ever be "over it", in many ways we are doing "ok". Somehow life does go on...

Brad no longer has to play "Mr Mom" at home and keep the household running. This has given him much more time to devote to his business, which in turn has helped it grow tremendously. Although he misses Noah so much, he loves to share Noah's story with everyone he meets.

Kailyn has struggled with sleep issues since Noah's death. She was spending every night in our room during the first few months. Gradually the nights have improved, and she is able to sleep through the night in her own room. She did decide to claim the room on the main floor that was meant to be Noah's room. It is still decorated with many "Noah" touches and she is much happier there. She still has some pretty emotional days where she falls apart, but for the most part she has adjusted well.

Joshua has never shown much outward emotion or grief. But I know he processes things in his own way and every so often out of the blue, he'll sigh and say "I miss Noah." He still prays faithfully each and every night that Noah will have a good time in heaven.

As for myself...my life has completely changed. I have been back at work for about a year now. I did take a different nursing position with home care as I really needed a fresh start and my job is really a perfect fit for me right now. I have time that I never had before....time to take care of myself, to exercise, to eat right, to spend time with friends, to enjoy my other kids, to travel, to sleep through the night. It has taken me a long time to figure out how to live a "normal" life. As strange as that may sound, I really had forgotten how to do that. I am still in the process of learning how to live this new life. It's one day at a time.

Slowly, I have sorted through Noah's things, giving some away and storing or displaying the most treasured ones. We sent boxes of medical supplies to Romania to be used by a missionary couple. My mom made a beautiful quilt with some of our favorite items of clothing that we snuggle up with on the couch. But the crib still remains in our room. I don't know why that is the one thing I have been unable to tackle, but there is a comfort in having it there. There have been many days where I have felt ready to take it down, but both Brad & I just never seem to be able to get around to doing it. Perhaps it is the huge gaping space it will leave there, or perhaps it is just one last reminder that our lives are completely changed. And so for now it will continue to sit there for as long as we need it to.

The waves of grief still hit me...some days just as intense as if I was back in that ICU room...some days it still takes all my willpower to get out of bed. All I can do is ride them out, knowing that when the wave subsides, I will be able to laugh and enjoy myself...until the next one hits. I long for my old life back. I long to be eating crappy hospital food...to wake up with an aching back from sleeping yet another night on those hospital chairs...to be stuck in that hospital room thinking I just might go crazy watching baby einstein for the millionth time...to be woken multiple times a night from beeping pumps...to fall asleep to the gentle rise and fall of the oxygen concentrator. I miss planning my day around Noah's TPN schedule and meds. I miss the people who loved and cared for my son. I miss the craziness of our life with Noah. I just really, really miss my son.

A year and a half without my sunny boy.

A year and a half closer to seeing him again...

Christmas #2

2010-12-25T18:54:00.002-06:00

Today marks our 2nd Christmas without our little boy. In some ways this day has been easier than last year...in other ways, it is still just as painful, if not more. There is a huge gaping hole here, and every joy that today brings is, and always will be, laced with grief. These are bittersweet moments. Thank you for those of you who took the time to remind us that Noah is not forgotten. That means more to us than you could ever know.

Before we opened our gifts, we trudged through the huge snowbanks to decorate Noah's grave for Christmas.

Kailyn made a special snow angel for our little angel...I miss you, my sunny boy full of more joy than any child I have ever known. I miss celebrating this special time of year with you. However, I know in my heart that you are celebrating today in a way that we can't even begin to imagine...celebrating at the foot of the King, with more gifts than we could ever give you, and all the food you could never have here on earth.

Team Noah

2010-10-07T12:57:00.002-05:00

In spring of 2009, Noah was granted a very special wish through the Children's Wish Foundation. Our family was able to spend a wonderful week at Disney World where Noah met his favorite character, Tigger. The Wish Foundation gave us this opportunity to create memories which we will cherish always. Now it is time to give back...

On Oct 17, 2010 11:45 AM, our family will be participating in the Wishmaker Walk for Wishes in support of The Children's Wish Foundation of Canada. Thousands of Canadians in over one hundred communities will gather together to help create the magic of a wish for children with high-risk, life threatening illnesses. These children are coping with things most of us can only imagine and the wishes they receive provide a ray of hope during a difficult time. The Children’s Wish Foundation of Canada has never refused an eligible child and has granted almost 15,000 wishes! Wish requests continue to increase and they are currently providing 3 wishes a day! I hope you will join me and help to create the magic of a wish by supporting my efforts in the Wishmaker Walk for Wishes. To sponsor me online, just follow this link http://my.e2rm.com/personalPage.aspx?SID=2801767 and access my secure fundraising page.

You can help The Foundation even more by spreading the word about this exciting event! To encourage others to participate or to sponsor me please pass my website address along. It's easy; just paste the above link into an email. Join us on Oct 17, 2010 11:45 AM! Visit The Children’s Wish Foundation website and learn more about how you can create the magic of a wish!

Thanks for your generous support!

Five Years

2010-09-21T21:14:00.006-05:00

Five years ago we were blessed with an amazing treasure that turned our world upside down and forever changed who we are.

Today we celebrate our son and remember his life...

Thank you to others who also remember our Noah and continue to leave us treasures at his grave...

Happy birthday Noah. Wish we could be celebrating with you. Missing you today and always, my sunny boy...

Another Anniversary

2010-08-04T11:35:00.005-05:00

One year ago today we buried our son.

I can no longer think back to what Noah was doing one year ago at this time. And that makes me terribly sad.

Thank you to those who have remembered us this past week in special ways. And thank you to the person who visited Noah's grave and left this stone...

One Year

2010-07-29T07:27:00.001-05:00

One year ago today, we watched helplessly as our son slipped away.

I do not know where the time has gone, or how I have managed to live 365 days without my sunny little boy. Most days now I can say that I find glimmers of hope. I can find things to smile about and be thankful for. But it is still so very difficult to find true joy in this new life. My mind is no longer focused on the things of this world, but instead, my soul aches as it never has before, for something more...something beyond this life. I cling to the hope of life beyond the grave and I wait impatiently for the day when I will see my Noah.

This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but ...

We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
There's a place where we'll see your face again
We'll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father smile and say "well done"
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now you're home
And now you're free, and ...

We have this hope as an anchor
'Cause we believe that everything
God promised us is true, so ...

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope

~With Hope~

Stephen Curtis Chapman

(written after the tragic death of his daughter)

Our little Noah, you touched our lives in a way that words could never express. You were such an incredible, courageous little boy who could somehow capture the hearts of everyone you met. We were so blessed to hold you in our arms, even for such a short time. We will forever treasure those beautiful years.

Missing your bright smile. Missing your precious laugh. Missing hearing "mama" repeated over and over again. Missing how our lives revolved around your needs.

Missing you today and everyday...

Last

2010-07-27T22:10:00.001-05:00

It's been a tough month...

My mind can't help but relive "this time last year..." over and over again. Those days and weeks leading up to the end...had I only known then...had I only stolen more hugs and kisses, or taken more pictures...had I only taken the time to treasure all the mundane moments.

One year ago today, we headed to the hospital...never believing that this time would be our last.

The Myth of Getting Over It

2010-07-19T21:59:00.003-05:00

When our first child is born, a loud voice says, "Runners, take your marks!"

We hear the starting gun and the race begins. It's a race we must win at all cost. We have to win. The competition is called "I'll race you to the grave."

I really want to win.

Not everyone wins...

I'm soon going on stage to speak before a crowd of parents and loved ones impacted by the death of a child. My address is titled, "The Myth of Getting Over It." It's my attempt to answer the driving questions of grieving parents: When will I get over this? How do I get over this?

You don't get over it. Getting over it is an inappropriate goal, an unreasonable hope. The loss of a child changes you. It changes your marriage. It changes the way birds sing. It changes the way the sun rises and sets. You are forever different.

You don't want to get over it. Don't act surprised. As awful a burden as grief is, you know intuitively that it matters, that it is profoundly important to be grieving. Your grief plays a crucial part in staying connected to your child's life. To give up your grief would mean losing your child yet again. If I had the power to take your grief away, you'd fight me to keep it. Your grief is awful, but it is also holy, and somewhere inside you, you know that. The goal is not to get over it. The goal is to get on with it.

Profound grief is like being in a stage play wherein suddenly the stagehands push a huge grand piano into the middle of the set. The piano paralyzes the play. It dominates the stage. No matter where you move it impedes your sight lines, your ability to interact with the other players. You keep banging into it, surprised each time that it's still there. It takes all your concentration to work around it, this at a time when you have little ability or desire to concentrate on anything.

The piano changes everything. The play must be rewritten around it. But over time the piano is pushed to stage left. Then to upper stage left. You are the playwright, and slowly, surely, you begin to find the impetus and wherewithal to stop reacting to the intrusive piano. Instead, you engage it. Instead of writing every scene around the piano, you begin to write the piano into each scene, into the story. You learn to play that piano. You're surprised to find that you want to play it, that it's meaningful, even peaceful to play it.

Steven Kalas
ForMomsOnly's Journal January 31, 2010

I`m still trying to figure out what to do with that piano...

11 Months

2010-06-24T17:49:00.005-05:00

11 months...

Summer has kind of creeped up on me out of nowhere. I'm finding it to be a really difficult time of year. We are surrounded by signs of new life, warmth and sunshine. It's a time of year I have always loved. But this year, it brings with it so many reminders...the canola fields in full bloom...a stab to my heart as I remember those fields, surrounding us in their beauty on the day we buried our son.

I am not exactly sure what to do with this all. The memories are both comforting and haunting, triggered by the smallest of things, at the strangest of moments. As much as I want to remember my boy all the time, to have him close to me always, I find that I must push these memories aside in order to get through the day. It becomes a constant battle in my mind. In time, I hope to be able to make some sort of peace with the memories.

Vote To Refresh GKTW

2010-06-01T15:08:00.008-05:00

Please help refresh Give Kids The World Village with just a click of your mouse!!

By voting once a day, every day in June you can help Give Kids The World receive a grant of $250,000 through Pepsi to refurbish the Village villas. For those of you who have followed Noah's journey, you know what a very special place GKTW village is to us and to so many other families. We are so grateful to them for the amazing week we spent at the Village, and the very precious memories that we will always cherish.

Please help us give back to the village!!

Follow these easy steps:

1) Visit http://www.refresheverything.com/givekidstheworld and click the "Vote for this idea" button.
2) A pop up window will appear where you will enter your information and sign in.

3) After signing in, you will be taken back to the Give Kids The World page. Click "Vote for this idea" to submit your vote.

4) Tell your friends, family and colleagues to "Vote 2 Refresh" GKTW.

5) Repeat once a day, every day until June 30.

It really is that simple to help GKTW reach this amazing goal!!

An Ugly Pair of Shoes

2010-05-30T14:51:00.000-05:00

10 Months...

What can I say that hasn't already been said...

Exactly one year ago, I was frantically preparing to leave for Toronto. Our time in Toronto is so closely tied to that last week we spent with Noah. In my mind, it will always feel like the beginning of the end. So there are many memories attached to this month.

At the beginning of the month, we attended the Children's Hospital Memorial service. It was beautifully done and it was so nice to see some familiar faces that we have missed terribly. We were given this poem that has become a favorite of mine and helps put into words this journey of losing a child.

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.

I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by
before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.

Author Unknown

Thank you to our wonderful friends for the amazing dinner yesterday evening. Thank you for remembering this day.

Mothers Day

2010-05-09T10:05:00.000-05:00

What to do with this holiday...a holiday that celebrates motherhood...where everywhere you look, there are reminders of what can no longer be.

This holiday has kind of creeped up on me, but now that it is here, I can't help feeling so very lost and so very, very empty.

In my googling last night, I came across this interesting tidbit..."in the US, Mother’s Day started with a proclamation written by Julia Ward Howe. She called for a gathering of women to mourn the sons killed in the civil war and protest the futility of “their sons killing the sons of other mothers”. It wasn’t until 1962 that it became the hallmark celebration of commercialization that we have today." Somehow it made me feel better to read this...to know that this very commercialized holiday began like this...with mothers, like myself, gathering together, mourning the loss of their sons. I appreciate that it has grown into a day to honour mothers, but a day such as this also brings with it much sorrow to so many of us.

Today, I think of my own mother. I am so very thankful for her and for the support she has been to us all during these past years. I love you Mom!!

I think of my friends, and the wonderful mothers that I am privileged to know, and how I often marvel at their "supermom" skills.

But most of all today, I think of those who, like myself, woke up this morning unsure of what to do with this day...with the bittersweet experience of celebrating motherhood with their children...yet at the same time, mourning the loss of being able to mother all of our children here on earth.

I miss my little Noah...

I miss being known as "Noah's mom"...

I miss everything that being Noah's mom encompassed.

I hate that I am no longer able to do the job of mothering my boy here on earth, but in my heart, I will always be "Noah's mom". And no one can ever take that away from me.

So on this day, when it just plain hurts to do anything else, I will choose not to focus on what could have been. Instead, I choose to focus on the incredible gift I was given in mothering this beautiful child. I marvel that I was chosen for this task, and I would do it all again in a heartbeat...for that's just what mom's do. And I mourn for those who will never in their lifetime experience a joy such as our Noah.

9 Months

2010-04-27T21:18:00.010-05:00

9 months...
9 months we waited for our son...from the moment we knew of his existence on this earth, to his birth.

Now, 9 months has passed since his soul left this earth...

On the outside I think I look like I am doing ok. I have taken on a new job recently, a job which hits very close to home and emotionally is tough...but I can't imagine a place I would enjoy more and it is the perfect job for me in every way. I have also taken up running again...this has become my therapy. But on the inside, I am still so very fragile...one moment I will be ok, feeling like I am strong enough to handle this...the very next moment I am blindsided by a scent, a sound, a memory that I had pushed aside.

The rest of the family is keeping themselves busy as well and we are all finding ways to fill the days. Kailyn still struggles with sleeping issues, but they are slowly improving with time. On a side note: to the person who is responsible for the delivery of a single white rose to Brad's office on the 29th of each month, thank you!! We do not know who you are, but the gesture is so appreciated!!

Dancing With The Angels

2010-04-23T21:46:00.004-05:00

Memories surround me
But sadness has found me
I’d do anything for more time
Never before has someone meant more
And I can’t get you out of my mind

There is so much that I don’t understand
But I know

You’re dancing with the angels
Walking in new life
You’re dancing with the angels
Heaven fills your eyes
Now that you’re dancing with the angels

You had love for your family
Love for all people
Love for the Father, and Son
Your heart will be heard
In you unspoken words
Through generations to come

There is so much that I don’t understand
But I know

You're dancing with the angels

Walking in new life

You're dancing with the angels

Heaven fills your eyes

Now that you're dancing with the angels

We’re only here for such a short time
So I’m gonna stand up
Shout out
And sing Hallelujah
One day I’ll see you again

I will be dancing with the angels

Walking in new life

I'm dancing with the angels

Heaven will fill our eyes

When we're dancing with the angels

Monk & Neagle ~ Dancing with the Angels

Easter 2010

2010-04-05T15:01:00.005-05:00

We spent the Easter weekend away, attending a wedding...a beautiful way to celebrate a holiday fill of hope and promise. Another holiday "first" behind us. I wish I knew what to do with this huge void...this empty space in our lives...in everything we do. I will never get used to this...nor would I want to... Wishing we could be celebrating with you, Noah.

8 Months

2010-03-29T16:14:00.004-05:00

8 months later and it is still so fresh...so raw. I desperately miss my joy, my sunshine...

Grief is a tidal wave that over takes you,
smashes down upon you with unimaginable force,
sweeps you up into its darkness,
where you tumble and crash against unidentifiable surfaces,
only to be thrown out on an unknown beach, bruised, reshaped...
Grief will make a new person out of you,
if it doesn't kill you in the making.
Stephanie Ericsson I have become quite skilled at putting on the mask. But inside I am still tumbling and crashing...

Held

2010-03-16T14:09:00.003-05:00

Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us
Who have died to live, it's unfair

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held

This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held

If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our savior

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held
We'd be held

This is what it is to be loved and to know
That the promise was when everything fell
We'd be held

This is what it means to be held.....

Natalie Grant ~ Held

7 Months

2010-03-03T15:20:00.005-06:00

I thought this month perhaps I might feel different...no 29 on the calendar to throw me off. We were able to spend the weekend with friends in Vegas where I was able to laugh like I haven't laughed in a very long time. Definately a good thing. And yet, still it hits me like a ton of bricks, leaving me reeling. I find myself back in that PICU room all over again...feels as if it were yesterday. I ache for my boy...

Don't be mad if I cry

It just hurts so bad sometimes

'Cause everyday it's sinking in

And I have to say goodbye all over again

You know I bet it feels good

To have the weight of this world

Off your shoulders now

I'm dreaming of the day

When I'm finally there with you

Save a place for me, save a place for me

I'll be there soon, I'll be there soon

Save a place for me, save some grace for me

I'll be there soon, I'll be there soon

I have asked the questions why

But I guess the answer's for another time

So instead I'll pray with every tear

And be thankful for the time I had you here

So you just, save a place for me, save a place for me

I'll be there soon, I'll be there soon

Save a place for me, save some grace for me

I'll be there soon, I'll be there soon

I wanna live my life just like you did

And make the most of my time just like you did

And I wanna make my home up in the sky

Just like you did, oh, but until I get there

Until I get there

Just save a place for me, save a place for me

'Cause I will be there soon

Save a place for me, save a place for me

I'll be there soon, I'll be there soon

Don't be mad if I cry

It just hurts so bad

Matthew West - Save A Place for Me

This New Road

2010-02-11T10:06:00.001-06:00

"One of the things so astonishing and costly about losing a loved one is that, while the sun continues to rise and set, newspapers continue to be delivered, traffic lights still change from red to green and back again, our whole life is turned around, turned upside down.

Is it any wonder we feel disoriented, confused? yet the people we pass on the street are going about their business as though no one's world has been shaken to the core, as though the earth has not opened and swallowed us up, dropped us into a world of insecurity and change.

It will take us time to learn to walk this new road. Time, and a lot of help, so we don't stumble and fall irretrievably. Those who have had their own experiences of loss will probably be our most helpful guides - knowing when to say the right word, when to be silent and walk beside us, when to reach out and take our hand. In time, we will be helpers for others.

I have entered a new country. I will be patient with myself. I will look for companions of the way."

Healing after Loss - Daily Meditations for Working Through Grief by Martha Whitmore Hickman

Today my heart is heavy...another family is just starting down this new road and will bury their son today. This is a special family to me, who were in Toronto hospital while we were there, and helped make my time there so much more bearable. I got a kick out of how Ethan loved to compare tubes and meds with Noah. My thoughts are prayers are with you today and in the days ahead.

Another beautiful spirit gone so soon...another backpack left at the pearly gates...

http://www2.caringbridge.org/canada/ethanjakob/index.htm

6 Months

2010-01-29T14:34:00.005-06:00

Another day...another milestone...

Can it really be half a year since our world turned upside down?? Half a year sounds so long, yet often it feels like just yesterday that I held Noah, or heard his infectious giggle, or picked up the tupperware off the floor for the millionth time. I'm sure some days I still here Noah dragging his pumps across the floor.

A couple of weeks ago another boy we met at the Oley Conference lost his battle. I was able to attend his service online (thank God for the wonders of the internet). At the service someone talked about the image they had of that young man standing at heaven's gates, and dropping his backpack (his TPN backpack that was such a part of him), leaving it behind at the gate as he entered heaven. I love to think of Noah doing the same. Knowing that he no longer needs those things does bring some comfort. Kailyn decided there must be quite a pile of backpacks there already.

Someone asked me when the pain of this intense grief becomes manageable. It made me stop and think. And I realized that, yes, somewhere in this time, the pain has become more manageable. No, I don't miss him any less, the pain will always, always be there, and many days the aching of my empty arms is still so very intense. But I am slowly finding ways to put one foot in front of the other...to put meaning to it all...to begin to figure out how to live this new life without my son.

Bedtime Prayers

2010-01-25T11:12:00.002-06:00

"Dear God, I pray that Noah's having a good time in heaven..."

Joshua's bedtime prayer, every single night.

New Year's Resolutions

2010-01-11T21:06:00.002-06:00

NEW YEAR'S RESOLUTIONS FOR BEREAVED PARENTS

I Resolve:

That I will grieve as much and for as long as I feel like grieving, and that I will not let others put a time table on my grief.

That I will grieve in whatever way I feel like grieving, and I will ignore those who try to tell me what I should or should not be feeling and how I should or should not be behaving.

That I will cry whenever and wherever I feel like crying, and that I will not hold back my tears just because someone else feels I should be "brave" or "getting better" or "healing by now."

That I will talk about my child as often as I want to, and that I will not let others turn me off just because they can't deal with their own feelings.

That I will not expect family and friends to know how I feel, understanding that one who has not lost a child cannot possibly know how I feel.

That I will not blame myself for my child's death, and I will constantly remind myself that I did the best job of parenting I could possibly have done. But when feelings of guilt are overwhelming, I will remind myself that this is a normal part of the grief process and it will pass.

That I will not be afraid or ashamed to seek professional help if I feel it is necessary.

That I will commune with my child at least once a day in whatever way feels comfortable and natural to me, and that I won't feel compelled to explain this communion to others or to justify or even discuss it with them.

I will keep the truth in my heart--the truth that my child is always with me in spirit.

That I will try to eat, sleep, and exercise every day in order to give my body strength it will need to help me cope with my grief.

To know that I am not losing my mind and I will remind myself that loss of memory, feelings of disorientation, lack of energy, and a sense of vulnerability are all a normal part of the grief process.

To know that I will heal, even though it will take a long time.

To let myself heal and not feel guilty about not feeling better sooner.

To remind myself that the grief process is circuitous--that is, I will not make steady upward progress. And when I find myself slipping back into the old moods of despair and depression, I will tell myself that "slipping backward" is also a normal part of the mourning process, and that these moods, too, will pass.

To try to be happy about something for some part of every day, knowing that at first, I may have to force myself to think cheerful thoughts so eventually they can become a habit.

That I will reach out at times and try to help someone else, knowing that helping others will help me to get over my depression.

That even though my child is dead, I will opt for life, knowing that is what my child would want me to do.

~From the Brooksville/Spring Hill FL. TCF Newsletter

Goodbye 2009

2010-01-02T23:01:00.005-06:00

It's been a difficult year to let go of...

moving on into 2010...

a year that holds no memories of Noah...a year without my sunny boy.

I'd much rather hang onto 2009...the good, the bad and the ugly...

for 2009 knows my son.

5 Months

2009-12-29T17:12:00.000-06:00

5 months today...

Wishing it wasn't so...

Christmas

2009-12-27T18:03:00.000-06:00

Another first...

Christmas without Noah...

What can I say...

Unfortunately, we do not have many good Christmas memories with Noah. Most of the holidays were spent either in hospital, or things were heading in that direction. By the time New Years rolled around, we were always inpatient. The holidays have been stressful times over the past few years, last year being the worst. And so this year we can be thankful...thankful that Noah does not need to lie in an ICU bed for Christmas...that he is free to celebrate...what could be better than Christmas in heaven??

And yet, selfishly, I desperately long to be sitting in that ICU room...I would give up a thousand more Christmases...for then our boy would still be alive. Everything we do without Noah feels hollow and empty. I imagine it will always be that way...as a part of me will forever be missing on this earth.

Merry Christmas my sweet boy. I miss you so much...everyday.

Back to the Deep Freeze

2009-12-14T09:01:00.008-06:00

We have been back home for a few days now. Our trip went well, and despite the strangeness of it all, we had a good time. So many reminders there of Noah...the little ukulele in Ron Jon surf shop that I so desperately wished I had a reason to buy...meeting Tigger at breakfast...riding the carousel...Christmas at GKTW...watching Wishes fireworks...the list is endless. But we made many new memories...did alot of things we were unable to do last time...enjoyed the sun, the ocean, the food, and the infectious happiness that is Disney...very bittersweet. It really was a nice break from everything, which made it tough to come back...not only to the winter cold, but back to reality...back to our empty home...back to all the reminders of what we no longer have.
Since coming home we've been very busy...thrown right into the Christmas season with concerts, parties and now frantic last minute shopping. Busy enough that I have not had much of a chance to think about what Christmas will be like this year. But the reminders are constant...one less stocking to hang...the train set that sits in our garage, which I had already bought for Noah...no worries about spending another Christmas in hospital, but wishing more than anything that we were there. Thank you to the girls in our small group who have showered me with some fun gifts and an encouraging card for each day of this difficult month. Thank you so much for your support and for recognizing how tough this time of year would be.

4 Months

2009-12-03T10:58:00.003-06:00

It was 4 months on Sunday.

We were able to spend the day at GKTW...tracked down Noah's star, rode the carousel and enjoyed their Candyland party. Unfortunately his paving stone was not done yet, which was disappointing...but another excuse to come back again! It felt a bit out of place being at GKTW...like we were no longer part of the "sick kids club". And I couldn't help but feel so very jealous of all those families who still had their children to enjoy.

Our days spent at the ocean were wonderfully relaxing. There is just something about the ocean that is so peaceful and healing. I could stay there for a very long time. We are now in the World, enjoying the Caribbean Beach resort which is beautiful and eating a ridiculous amount of food on the free dining plan. We are enjoying ourselves and spend many moments talking about the things Noah loved or would have loved here in Disney. There are difficult moments of course...a million reminders each day of how different our lives are now...things are far too simple. But there are happy times too and I am so glad that we came.

Off to See the World

2009-11-23T14:45:00.000-06:00

These days we are all slowly hobbling along, looking for ways to fill our days and lessen the ache and longing for our old life back. Lately we've kept busy catching up on many things that have been neglected around here for so long. We've done the rounds of maintenance appointments for everyone...optomotrist, doctor, dentist (this one needed a couple of rounds), othodontist (yes, both kids are going to need this), H1N1 shots, and all the puppy shots. And now it's time to get away for a bit.

For a couple of months now we've been making some plans. We've all been feeling the desire to escape, and when thinking about where we should go, the answer was obvious. Back to Disney, which holds so many fond memories for us. And back to visit Give Kids the World...to see Noah's new paving stone, to find his star, to ride the carousel and remember him. It has given the kids something to focus on and look forward to and something for me to fill my time obsessively planning. So in a few days we are off to see the world.

Now that it is upon us, I have very mixed emotions. It has been difficult to try and pack for the four of us, and have absolutely no idea how to even begin without a million medical supplies. And to book our dining reservations for a family of four, instead of five. So why go back to a place that holds so many memories? I'm not sure...all I know is that my heart does not want to be anywhere that Noah is not. It desires to be surrounded by him, and very few places hold as many happy memories for our family as Disney. After such an emotional trip in February, I expect that this one will be even more so. But I am hoping and praying that there will be more smiles than sorrow...more happy tears than sad. A time to remember and also to make new memories.

The Ugly Monster

2009-11-19T10:23:00.001-06:00

Anger...

It has a way of creeping up out of nowhere and rearing it's ugly head. Every grief book I've read and every website I've visited talks about anger. And yet, no one likes to talk about it. In my head I know that most of my anger is unfounded, but it seems I can still find many things to be angry about lately...

Anger at the hospital...things I wish had been done differently during those last few days. For all the time in Toronto...putting Noah through that major surgery, only to have him die two weeks after we get home. It all just seems like such a waste.

Anger at the system...at the speech therapist who called the other day to begin therapy with Noah...something I had been fighting for years to get and could never make any headway. Or for the letter we opened last week from the geneticist at Sick Kids, requesting further bloodwork on Noah.

Anger at myself...for not being a perfect mother...for making mistakes.

Anger at those around me...for calling...for not calling...for trying to "fix" me...or not saying anything at all...for being able to move forward, while I am stuck in the past.

And yes, anger at God...for allowing this all to happen...for not stepping in and saving the day after all my pleading...for not answering the "why's". For the unfairness of it all...

I appreciate these words from The Compassionate Friends website which helps me put things into perspective...

"Anger is but one of many emotional reactions to the painful reality of death. It is important to recognize anger as a natural, human response. If we can allow ourselves to be aggravated, irritated, even angered, by relatively minor life disappointments, we are certainly entitled to feel angry when faced with one of life's most devastating experiences — the death of a child. Anger is not chosen, however, whether to remain angry, to refuse to surrender it or to resolve it ....is a choice."

It's a nasty emotion...this ugly monster...

I don't choose anger...but still it finds me.

I can see how easy it would be to allow myself to drown in it for awhile...to remain in that place. Thankfully, the moments of intense anger are fleeting, and end up overpowered by huge waves of grief, leaving a great empty sadness in it's wake.

Hold My Heart

2009-11-13T10:11:00.002-06:00

"...One tear in the driving rain,

One voice in a sea of pain

Could the maker of the stars

Hear the sound of my breaking heart?

One life, that's all I am

Right now I can barely stand

If You're everything You say You are

Would You come close and hold my heart..."

Tenth Avenue North

Hold My Heart

Halloween

2009-11-02T09:35:00.007-06:00

Another holiday usually spent in hospital...

It is still so odd to be home for all of these things...to know there is not an ER visit lurking around the corner. As frustrating as it was to spend so many of these moments away from home, it pales in comparison to this...this gaping hole left by our little Tigger this year. So many of our precious memories are wrapped up in the hospital. And days like this, I find myself missing the place and the people who worked so hard to help us make wonderful memories there.

And so we try our best to make new memories...but we all feel the longing for the part of us that will always be missing...Our special "Tigger" pumpkin...

3 Months

2009-10-29T06:19:00.000-05:00

I still have absolutely no idea how to live without my boy.

I miss him more each day.

And yet time marches on...

God's Garden

2009-10-20T09:05:00.001-05:00

God looked around his garden
And found an empty place
He then looked down upon the earth
And saw your tired face.
He knew that you were suffering
He knew you were in pain
He knew that you would never
Get well on earth again.
He saw the road was getting rough
And the hills were hard to climb.
So he closed your weary eyelids
And whispered ‘Peace be Thine’.
He put his arms around you
And lifted you to rest.
God’s garden must be beautiful
He always takes the best.
It broke our hearts to loose you
But you didn’t go alone,
For part of us went with you
That day God called you home.
Anonymous

Thanksgiving

2009-10-12T08:02:00.001-05:00

Thanksgiving is upon us...

...a holiday that we always seemed to spend within the walls of the hospital. For that reason, we have not really had much Thanksgiving celebration for years. And so it feels very strange to be at home today. This year we have decided to lay low once again and opt out of the traditional Thanksgiving activities.

I have to admit, I am having a difficult time mustering up a thankful heart this year.

It is hard to be thankful when all that surrounds me are reminders everything I no longer have. It is much easier to feel bitterness, anger and self pity.

But I am trying...

I know that today is not about feeling thankful...rather it is about a choice I have. A choice that does not come easy...a choice that must be made over and over again.

But with God's grace, and through the tears, I am reminded of all the blessings my Heavenly Father has given me. I have a wonderful husband, some very special friends, two amazing children here on earth, and I was blessed to be Noah's earthly mother, even if for only a short time...blessed with so many beautiful memories to treasure. And for that, I can be thankful.

2009-10-09T10:07:00.002-05:00

The soul would have no rainbow if the eyes had no tears.

John Vance Cheney

Noah, did you know I needed to see this yesterday??

Normal

2009-10-06T10:05:00.001-05:00

Strange, how in the eyes of those who do not know, our family now looks so "normal" on the outside.

I feel anything but normal...

I'm beginning to think our society has this grief thing all wrong. The first few days of grief is so public. Then the funeral is over and everyone goes home and gets back to their own lives. The cards, phone calls and visits become fewer and fewer. And somehow we are expected to pick up the pieces and begin to move on from this place.

But loss changes a person. I am different...forever changed. And I have yet to know what to do with that.

I am beginning to understand why other cultures wear mourning clothes, or noticable items to identify themselves as a bereaved person. The importance of showing others that you have suffered a great loss makes a great deal of sense. Some wear their grief for months...sometimes years. It must make it easier to enter back into society, knowing that there is no need to hide your loss. That everyone knows just with once glance how very fragile you are...that you are a long ways from "normal". And that you can easily identify with others who are also suffering their own losses.

Despite how simple it now is, leaving the comfort of home is difficult these days. Strange to have nothing to pack up...no appointments, meds, feeds or TPN to plan around. Strange to be out in public and not have the looks or the questions...no strangers drawn to us by Noah's contagious smiles. The normalacy of it all screams in my ears...oh how I miss it!

Two Months

2009-09-29T22:20:00.007-05:00

Time is now measured by the weeks and months since Noah's death...

It's been two months...I am still so very, very lost.

I miss you Noah.

Small Talk

2009-09-27T14:34:00.005-05:00

Small talk...

I hate it.

Lately it seems like such a waste of time and I am no longer very good at those types of social situations. Putting on the mask, and pretending to care about nothing...when all that consumes my mind is Noah.

Last week, while making the obligatory small talk with a stranger, the question came up..."How many children do you have?"

I knew that would come up sooner or later. But, wow...I was definately not prepared for it. My heart dropped and I stumbled over my words, not knowing what to say. Do I say 2? Or do I say 3 and leave it at that? There really is no answer that sounds right. In the end, I said 2, but it was difficult to say anything else after that.

Afterwards, I couldn't stop thinking about it...how terribly wrong that sounded...how guilty I felt for saying it. And how much I wanted to blurt out that I had 3 children, and my son just recently died. How much I wanted her to know how her very innocent question had hurt me.

What a conversation killer that would have been.

I hate small talk.

Four

2009-09-21T19:42:00.006-05:00

Noah would have been four today.

Four years.

The first of many birthdays we will celebrate without him.

If it hadn't been for the incessant whining of the puppy to be let out, and the need to get the kids on the bus, I would have pulled the blankets over my head and slept until Tuesday. In some ways, today is as bad as I had imagined. In other ways, it's just another day, in an endless stream of painful, lonely days.

I have been writing this blog in my head for days...wondering what I could possibly write on this day that would describe the vast array of emotions...the empty aching arms...the endless longing to be celebrating with our son today.

There really are no words.

Four years ago today, we welcomed our son into this world, knowing that time was a precious commodity with Noah. What a miraculous day that was! His tiny, fragile body struggled from day 1 and we worried and wondered. If we had known on that day, that we would have almost 4 years with Noah, we probably would have rejoiced. Now we know that 4 years was not nearly enough time. That those years would be gone in the blink of an eye...and we'd be left behind in this state of bewilderment, wondering how this could have possibly happened.
And so we struggled with what to do with today. How do you begin to acknowledge this day...the day that marks the first day we met our son. For it still needs to be remembered and celebrated.

In the end, we opted for a pretty low key day. After school, we went out to the cemetery. Although I had hoped to stay there longer, the weather did not cooperate. How fitting though, that it was a dreary, drizzly day. It would have felt very wrong if the sun had shone today. We each wrote Noah a special birthday message, attached them to four balloons and released them to heaven...

We left four more balloons behind...

...then went out to dinner for some family time.

Happy birthday, dear Noah. We miss you so much today...and everyday. How we wish you were here. We miss your beautiful smile...your infectious giggle....your unconditional love...your exuberant embracement of life. We take comfort in knowing that you are celebrating with the angels today...able to actually EAT your birthday cake! One day we WILL celebrate with you again.

We love you Noah...

Over the Rainbow

2009-09-19T14:08:00.010-05:00

Rainbows have become very special to us...

The evening we drove home from the hospital after Noah died, there was a beautiful rainbow in the sky. It felt like a sign...a special message from Noah. I so wish we had stopped to take a picture...but our minds were just not in that place at that moment.

Later that evening, Nicole (one of Noah's home care nurses) stopped by and mentioned seeing the rainbow as well. In fact, I think her exact comment was "Noah, you little bugger, you're playing with us already!" A couple of weeks ago, Nicole showed up with this beautiful gift for us. It took me a while to find a home for it, but now that it is in the flower garden, right by our front door, we are so happy with it.
Thank you so very much, Nicole. This is such a meaningful gift...the perfect memorial for Noah. We are all in awe of the fantastic job you did...we love it!!

"Somewhere, over the rainbow,

Way up high.

There's a land that I heard of

Once in a lullaby.

Somewhere, over the rainbow,

Skies are blue.

And the dreams that you dare to dream

Really do come true.

Someday I'll wish upon a star

And wake up where the clouds are far

Behind me.

Where troubles melt like lemon drops,

Away above the chimney tops.

That's where you'll find me.

Somewhere, over the rainbow,

Bluebirds fly.

Birds fly over the rainbow,

Why then - oh, why can't I?

If happy little bluebirds fly

Beyond the rainbow,

Why, oh, why can't I?"

Charlie

2009-09-16T10:30:00.006-05:00

They say a puppy soothes the heart and soul...

We picked up Charlie on friday and already he has been very therapeutic for us all and is keeping us busy. The kids love having him to dote on. This never would have been possible with Noah, but I can't help imagining how much Noah would have loved this little guy and what fun they would have had!

It's been 7 weeks today...how is that even possible???

Lasts

2009-09-08T20:38:00.002-05:00

I was reading someone's blog today...another mother who lost her special needs child. She writes about all the unrecognized lasts. All those everyday moments in the time I now think of as "before". I think alot about those moments too as I look back and wonder...if I had only known...

Spending that last week at the lake and not in a hospital room...what a blessing that was. Our last holiday together. We have many precious memories to treasure from those days.

Sunday...just finally being home for the first time in weeks...our last day at home as a family of five. Watching Baby Einstein...napping on Daddy's chest for the last time. Part of me wishes I had known. I would have spent less time doing laundry, preparing to go into hospital, and more time with Noah....grabbed a few more hugs...soaked up a few more smiles...gathered up a few more giggles to store away for today.

Sunday evening...hooking up Noah's TPN, going through our complicated evening routine, and tucking Noah in his crib...the last night we would fall asleep listening to his concentrator...the last night we would share a room with Noah.

Monday morning...dressing Noah in the last sleeper ever wore...settling him in his car seat for his last car ride as we made our way to the ER for the very last time. And later that morning, watching him take his last breaths on his own...hearing him cry for the last time, before he was intubated and the machine took over.

Tuesday morning...Noah wakes up, fighting to pull out his breathing tube. We all frantically race to sedate him again...the last time he looked at me...the last time I saw his eyes.

Wednesday...the frantic action of the end drawing near...a million machines...making that final decision for Noah...

Letting him go...

Then the sudden stillness and silence.

Holding Noah for the last time...and finally, forcing ourselves to let go of his body and walk out of PICU for the last time...without Noah...now a family of four...and the beginning of many painful firsts.

Those moments are so vivid...seared into my memory. Lasts that are only recognizable in the "after".

Beauty From Pain

2009-09-02T08:56:00.004-05:00

The lights go out all around me

One last candle to keep out the night

And then the darkness surrounds me

I know I'm alive

But I feel like I died

And all that's left is to accept that it's over

My dreams ran like sand through the fists that I made

I try to keep warm but I just grow colder

I feel like I'm slipping away

After all this has passed

I still will remain

After I've cried my last

There'll be beauty from pain

Though it won't be today

Someday I'll hope again

And there'll be beauty from pain

You will bring beauty from my pain

My whole world is the pain inside me

The best I can do is just get through the day

When life before is only a memory

I wonder why God lets me walk through this place

And though I can't understand why this happened

I know that I will when I look back someday

And see how you've brought beauty from ashes

And made me as gold purified through these flames

After all this has passed

I still will remain

After I've cried my last

There'll be beauty from pain

Though it won't be today

Someday I'll hope again

And there'll be beauty from pain

You will bring beauty from my pain

Here I am at the end of me

Trying to hold to what I can't see

I forgot how to hope

This night's been so long

I cling to your promise

There will be a dawn

After all this has passed

I still will remain

After I've cried my last

There'll be beauty from pain

Though it won't be today

Someday I'll hope again

And there'll be beauty from pain

You will bring beauty from my pain

~Beauty from Pain ~ Superchick

One Month

2009-08-29T08:49:00.004-05:00

Today marks one month since we lost our Noah, although it feels like yesterday. We are all so very lost...the reality that Noah is really gone sinks in a bit more each day. I have tried to write this post many times over this morning, but my words are all a jumbled mess and it's hard to see through the tears. There is no way to accurately describe what I am feeling...what we are all feeling. "How are you?" is the question we get asked a million times over. How can we ever answer that question? Usually we give the pat "I'm ok" answer. But the truth...the truth is that, no, we are not ok...I can't imagine ever being ok again. Everyday is a huge challenge...everyday there are more reminders, more things that we miss. How can we be ok when a huge piece of our hearts was ripped out and buried deep in the ground?

Our whole world crumbled in a moment and yet life continues on around us as if nothing has changed. The sun still rises, the birds still sing, plans are still made.

Life goes on.

But for us, life will never be the same. We've heard some comments that now our lives can get back to "normal". I have to chuckle at that. The thing is, that the past 4 years was our normal. Yes, it was a precarious life, a life that was not envied by others. But we were good at that life. We loved that life. We learned how to roll with the punches, how to cope in the busyness. We'd do it all and more in a heartbeat, just to have our Noah back. For we got back SO much more than we ever gave. I hate our new normal...that this is now our reality. That our sunny little boy, who never held back his unconditional love, ceases to exist here on earth.

Yes, life goes on.

But for us, it will never be as full, as bright as it was with Noah.

2009-08-25T09:16:00.002-05:00

"You keep track of all my sorrows.

You have collected all my tears in your bottle.

You have recorded each one in your book."

Psalm 56:8

Thank you

2009-08-21T12:21:00.012-05:00

How to even begin to say thank you. There are so many of you who have been so thoughtful in the past three weeks. Please forgive me for not getting out thank you cards. I have neither the energy or motivation these days. So I hope you will all accept this post as my thank you.

Thank you for the many cards, emails and gifts we have recieved and for your words of sympathy.

Thank you for the flowers and plants that have been sent. They have brightened up our home.

Thank you for the meals and treats that have shown up at our door. They have helped so much on those days when it is hard enough just to get out of bed.

Thank you to those who have given Kailyn & Joshua gifts and made sure they feel loved and cared for.

Thank you to those of you who helped with Noah's funeral:

Thank you to our small group for taking care of many details.

Thank you Erin for the beautiful slide shows and pictures.

Thank you Dads for being pallbearers.

Thank you to all of you who had a part in the beautiful music for the service (Noah would have loved it!).

Thank you Ray and Ruth for your parts in the service.

Thank you Hilda for the beautiful tribute.

Thank you Doris for reading the obituary and also for your beautiful tribute.

Thank you Eric and Becky for reading scripture.

Thank you to those of you who prepared and served the food.

Thank you to Sysco for your generous donation of food for the funeral.

Thank you to the ushers, the VPU and for babysitting in the nursery.

Thank you to everyone who joined us that day in celebrating Noah's beautiful life.

Thank you for those very special people who have spent much time at our home during the past weeks. Thank you for being here and listening, even when you don't know what to say. You know who you are.

Thank you to all the staff at Children's Hospital who have taken such wonderful care of our family over the past 4 years. Thank you to Doris and Nicole for taking such fantastic care of Noah at home. We have grown to love our hospital family and we will miss you all so very much.

Thank you to the staff at Toronto Sick Kids for your wonderful care in Noah's last few weeks.

Thank you for all your generous donations made in Noah's name.

Thank you to our online friends who have been fundraising in Noah's honour. Noah will have an engraved paving stone on the Avenue of Angels at Give Kids the World that we can one day go and see. So much money was raised that other children who have passed away will also recieve this very special gift.

Most of all thank you for all your prayers. They are what sustains us in these very lonely days.

Saying Goodbye

2009-08-17T16:27:00.004-05:00

"The Lord is close to the brokenhearted;

He rescues those whose spirits are crushed."

Psalm 34:18

Thank you Erin for capturing these beautiful memories for us. They are a treasure.

Balloon Release

2009-08-13T09:58:00.006-05:00

"...And with your final heartbeat

Kiss the world goodbye

Then go in peace, and laugh on Glory's side,

and Fly to Jesus

Fly to Jesus

Fly to Jesus and live!"

Chris Rice ~ Come to Jesus

The Weight of You

2009-08-10T05:05:00.001-05:00

There is a hole the size of the grand canyon in our home and our hearts. The "why"s, "what if"s, "should have"s and "could have"s never end. It hurts to breathe...

So much that I miss...

I miss your sweet disposition...the sunshine in our days...the way your eyes would disappear when you smiled...watching you bum scoot down the hall...untangling your tubes for the millionth time each day...picking up the tupperware left in your wake...hooking up your pumps every night...the smell of your hair just freshly washed.

I miss the sounds of you...your belly laugh...hearing you call out "mama"...your cry...the sound of your bucket trailing after you...the soothing sounds of pumps..the harsh middle of the night beeps...the gentle swoosh of the oxygen concentrator.

But it's the weight of you that I miss the most. I can look at pictures...I can listen to the videos of your laughter...I can still smell you in the last sleeper you ever wore...I can even still turn on the pumps for a moment, just to hear their familiar sounds. But my mind can no longer conjure up the weight of you. The feel of you in my arms...your tiny hands clinging to my shirt as I carry you.

I miss you.

Memories

2009-08-08T11:20:00.003-05:00

This first video was played during the service on tuesday, and the second video was played at the end of the service, as we (the family) said our final goodbyes to Noah. Thank you so much Erin...we will treasure these always.

Desperately missing you, sweet Noah, more than words could ever say...

Obituary

2009-08-06T10:10:00.001-05:00

Jesus opened wide his arms to welcome a special little one home. Noah Grant John Loewen was sent to us from heaven on September 21, 2005 in Winnipeg, Manitoba. Born with a rare genetic disorder, chromosome 12q deletion, Noah’s life was not easy. Noah spent much of his time in Winnipeg Children’s Hospital, although his family did everything they could to make sure Noah spent as much time at home as possible. Despite the many medical challenges, pain and frustrations, Noah was a delightful child with a happy disposition and a smile that could light up any room. He managed to charm everyone he met, and forever changed the lives of those he touched. Music was a huge part of Noah’s life and never failed to bring a smile to his face. He will be fondly remembered banging on his drum and strumming his ukulele.

In early spring of 2009, Noah was granted a very special wish through the Children’s Wish Foundation. He was able to travel to Disney World with his family to meet his favourite character, Tigger, and stay at Give Kids the World. This was a wonderful time of memory making and moments that the family will treasure always.

Noah spent most of his last few weeks in Toronto at Sick Kids being treated for intestinal failure, where many others were touched by his sweet sunny disposition. In early July, he returned home and was able to spend his final days at the lake, enjoying his Grandparent’s cabin.

On Monday, July 27th, 2009, Noah was admitted to Children’s Hospital and thus began a rapid decline. After his very courageous battle, Noah’s little body was tired. On Wednesday, July 29th, 2009, surrounded by love, Noah was received into the arms of the Father.

He leaves behind to treasure his memory, his father, Brad, his mother, Nichole, his sister Kailyn, his brother Joshua, Grandparents, one Great Grandmother, many aunts, uncles, cousins and friends. Donations can be made to the Children’s Hospital Foundation of Manitoba or to Give Kids The World.

Noah's Last Week

2009-08-01T09:00:00.009-05:00

Noah Grant John Loewen

September 21, 2005 - July 29, 2009

Funeral service will be held on Tuesday, August 4, 2009 at 2:30pm

Fort Garry MB Church1771 Pembina Hwy, Winnipeg, MB

Donations can be made to Childrens Hospital Foundation of Manitoba or to Give Kids The World

Fly to Jesus, sweet baby boy...

Wings

2009-07-29T18:41:00.009-05:00

It is with great sadness and a heavy heart that I write this blog.

Noah earned his wings today. Just after 2pm this afternoon he went to be with Jesus.

No more tubes...no more pain...he is whole.

PICU Day 2

2009-07-28T18:30:00.005-05:00

Things are rough here...we are living hour to hour...things are still critical. The night was very rocky with worsening blood gases. Noah is proving to be very difficult to ventilate. His asthmatic issues really complicate things, causing these long, forced expirations, that do battle with the breathes the ventilator is trying to give him. Ketamine has been added to his ever growing list of drugs to help with the asthmatic issues, as well as lots of ventolin. Many ventilator changes to try and find a happy place for Noah, but we still don't seem to be there yet. Gases are still bad, but not worsening this evening. Noah's blood pressure has begun to drop...he received more albumin and a dopamine infusion was started. He is still spiking crazy high fevers and his kidneys are not functioning well. Nothing has grown so far on any of the cultures and H1N1 results won't be back until tomorrow. So really, not definitive diagnoses yet other than ARDS (acute respiratory distress syndrome).

Line access, as always, has been a major issue again, as Noah is needing more and more meds. Since our central line is only a single lumen and Noah needs that for his TPN, more access was quickly needed. The docs managed to get a double lumen PICC line in his femoral vein, but because of so much scarring, were unable to thread it much. Hopefully it will at least buy us some time.

Praying once again for another miracle.

(Update: 2:00 am July 29 ... Nichole called me (Brad) in early this morning because Noah was going downhill very fast. The Doctors were not sure if he would make it through the night. Noah is currently on medication to sustain his blood pressure and effective heart beat, he is also on the oscillating ventilator and kidneys have shut down. More updates to come as there are any.)

(Update: 12:00 pm July 29 ... This morning at around 9:00 Noah's blood pressure dropped to a critical low and he went into Cardiac Arrest. There was very little the doctors could do except some last effort medications. After almost 2 minutes, Noah (and God) had his own plan and returned to spontaneous circulation. He is still fighting and will have a tough day ahead. Thank you for all the prayers... God is real, he is listening, and answering...)

PICU Day 1

2009-07-27T23:56:00.001-05:00

Did I really write that title???...thought I was done counting days for a while.

It's been one of those days today.

We got to the ER around 9:30 this morning, where Noah was taken right into the resus room. His breathing continued to get worse throughout the morning with lots of coughing up blood, his oxygen needs kept climbing, and his blood gases continued to go downhill. Around noon he was moved to PICU to try some BIPAP, but he did not tolerate it well, and he was immediately intubated. He is now on the ventilator, quite sedated and his lungs are getting the rest they need. After watching Noah work so hard all morning, he deserves a good rest. His blood gases have not improved much, but hopefully with more fiddling with the vent settings and some doses of bicarb, this will turn around. He is recieving blood this evening to combat his dropping hemoglobin, lasix to help with the fluid in his lungs, along with some albumin to help maintain his blood pressure.

What exactly is going on is still unclear. His chest xray looks particularly bad, with definate pulmonary edema and some question as to whether there is fungus growing in his lungs. He is also presenting with some classic signs of the H1N1 flu, so he has been cultured from everywhere for everything. We should have some results back tomorrow. For now, no chances are being taken and he is under strict isolation. ID has also started him on Tamiflu (an antiviral flu medication) just in case, along with antibiotics to combat any bacterial infection. They are holding off on the antifungal for now and we will wait to see what grows in his lung secretions. Whatever is going on has made him very seriously ill and he's got me pretty worried. Trusting in our heavenly Father tonight to carry us all through these rough days.

Back Again

2009-07-27T07:30:00.002-05:00

I was hoping to sit down today and post some pictures...we had a wonderful time. But that will have to wait. Seems that our hospital reprive is over. After a sleepless night, we are off to the ER with fevers and increased work of breathing.

Repacking!

2009-07-17T16:47:00.004-05:00

I have spent the day racing around, trying to repack clothes, supplies, food, and somehow get somewhat organized with all of Noah's medical stuff. So much has changed since we were home last time. Hopefully we will get all our supplies and prescriptions by this evening. Right now I am thinking that I am a bit crazy to attempt to get away already with so much waiting to be done at home. But it can all wait some more. And it will be worth it, right???

In the midst of this, today I have experienced the downside of having a public blog for all to see. I got an email today from someone who has concerns that others are seeing what I have written (particularly of our travel issues) as magnifying our problems. Since I tend to be too sensitive and cannot brush these things off very easily, I feel the need to address it here. Just so it is clear, this is a public blog of our family's very personal thoughts, feelings and experiences. I am disappointed that others feel the need to judge what I write or to compare it to others who are suffering. Sometimes I need to vent, and this is the place for me to do it. I am not expecting everyone to agree with everything I post. I am not comparing our travels or our medical system to others in third world countries and I am well aware of those issues. I know that we are very fortunate to have all that we have and to have access to these opportunities for Noah. There are so many others of you who have much larger burdens to bear, which was very apparent at Sick Kids.

However, we battle everyday for Noah...we battle the medical system...we battle other systems that create obstacles for special needs...these can get very frustrating and overwhelming. Even though some of these battles may seem very minor to others, and perhaps rightly so, this is our world and for us at the time, they are huge. I do not expect others to understand, just as I cannot begin to understand what others are going through. We all have our own battles to face. But, I do expect this to be a place where I can freely express what is going on in our family.

Very much looking forward to spending this evening with friends that I have missed terribly. Tomorrow I am off to my parents cabin with Noah, and the kids are each spending a few days out at Turtle Mountain Bible Camp. Brad has to stay back to catch up on work. I will be away from the world of computers and blogger for a while and hoping for some relaxation. So no news on here will be good news!

Home Home

2009-07-16T21:05:00.001-05:00

We are home home!!

We are so glad to be home...feels strange, but good. As always, it's a bit of an adjustment, and quite hectic, trying to get organized again with all the medical changes and there is so much to catch up on. And with the kids off to camp next week, my is plan to go out to my parent's cabin close to the camp...the next couple of days will be very busy! But I'm looking forward to getting out to the cabin and enjoying some true summer.

The trip home was another ridiculous experience with Air Canada. How is it that they can make things so miserable?? When we tried to check in for our flight, a manager was called over who informed us that, once again, our oxygen was not on the flight. That was the last straw for me...I was very upset...I just wanted to get home so desperately! That they could screw this up twice, after we are paying extra for this "service" and have jumped through all their medical desk hoops and paperwork nightmares...unacceptable. First I was told that they wouldn't get it until the next day...to which I explained very nicely that this was just not possible. We NEEDED to get to the hospital. The manager contacted the higher ups, explained our situation, and then magically someone tracked down the oxygen and we were on the next flight. The manager did what he could...put us in the Maple Leaf Lounge and bumped us up to first class. But definately not worth the hassle and worry. Air Canada, you have managed to make more customers unhappy...yes, you will be hearing from us. Kim, so sorry we missed you at the airport...wish we had made it in time for you all to welcome us home!

By evening we were settled into our hospital...it was nice to be back among "family". Yesterday was a day of getting everything organized and working out issues to transition home. We also did an ultrasound on Noah's wound, since it is still draining, but there is just a very tiny pocket of fluid, so it should continue to drain out on it's own and heal up. We are still working on getting our IV pantoprazole for home use...Manitoba Health is making it very difficult. For now we have a couple of weeks of the med from the hospital, and then we may have to jump through some hoops to get more. But hopefully things will be worked out by the time our supply runs out. Today we had a bit of a scare when our home TPN ended up at Winkler hospital instead of Winnipeg. But they sent the truck back for it, and we finally got our delivery.

Thank you so much to the house fairies for cleaning our house and the beautiful flowers...our freezer is also full of food...what a nice treat to come home to!

Home ... kind of

2009-07-14T22:04:00.002-05:00

I am sure that Nichole will do a more formal post soon, but she has no internet access at the hospital here in Winnipeg. That's right, we are home from Toronto and although Noah and Nichole went straight from the airport to the hospital, it is good to be home.

Nichole and Noah were on a different flight than Kailyn, Joshua, and I (Brad). Westjet was great to cover our flights, but Noah needed Oxygen and so went with Air Canada (for the last time). AC once again were not prepared for Noah's care and they were bumped from their return flight .... again.

So after a long day and couple hic ups, we are home. They plan to be out in a couple days and finally be freed from hospital for a while.

Thank you to the "house fairies" for a clean organized house to come home to.

Toronto Day 42

2009-07-13T21:27:00.000-05:00

My last Toronto post...finally...

A long day, just killing time until we leave tomorrow. Everything is a go...praying it all goes smoothly tomorrow. I am so anxious to be back home. It's been a long haul, but worth it. Noah is going home minus his NG tube, suction and prolapsed stoma. He has gained a new G tube, J tube, rearranged intestines, a stomach that actually empties, and we have some feeds with fat trickling in those intestines. Alot of good progress, and although we are still very far from being able to say goodbye to TPN, it's a start. We are leaving with much more hope.

A better day for Noah today...the increase in Domperidone seems to be helping the retching and he was more himself today. We decided not to rock the boat and make any changes to his feed today. We will wait until we are settled back in Winnipeg again.

A volunteer hairdresser came by today and gave Noah a haircut...

A before picture from yesterday...

And after...

I couldn't believe how still he sat for her! He looks so different...Ok, I do miss his crazy surfer hair and his curls in the back, although I do think he looks pretty cute...

Toronto Day 41

2009-07-12T20:49:00.003-05:00

Well, we really wanted to get to Canada's Wonderland, but by the time we got Noah out on his pass, we figured it was probably not worth the hour long drive to get there. We had gotten free tickets for a second day at Ontario Place (since their guaranteed weather was in effect yesterday), so we decided to kill a few hours there again. It was like night and day compared to yesterday. The place was JAM PACKED and it felt like we were in a cattle herd...ok, do you Torontonians not understand the concept of personal space???

The kids mostly just played at the water park since the lines were unbearably long (even to get into the waterpark we had to wait in line as it was at maximum capacity!). We did do one ride (the ride that the kids did about 30 times in a row yesterday) and we waited in line for well over an hour! And then a huge family had to nerve to cut into this line...what a sad lesson those parents were teaching their children. We did complain...that didn't seem to matter...but, hey, what goes around comes around, right?

Certainly not as enjoyable as yesterday, but it kept the kids entertained, and Noah was happy as usual just being out and about.

Toronto Day 40

2009-07-11T21:53:00.000-05:00

A very nice day today...we were able to hook Noah up to our feeding pump, which gave us a full 7 hour pass today. So we spent our pass at Ontario Place. It was the perfect day to go...it poured all morning, but cleared up by early afternoon, when we got there. So the place was DEAD! We have been using Noah's World Passport from his wish trip, which has allowed us to get to all these places here in Toronto (this was given to us at Give Kids the World, and gives our family free admission to a huge list of amusement parks all over the world for one year).

Noah loved meeting Elmo...

The Treehouse show (Toopy & Bino) was a huge hit with him as well...
The kids loved all the rides, especially with no waiting in lines...

And Noah loved watching us on the rides...
The waterpark...
A fun place to hang out...we were so glad we went. Tomorrow we are hoping to get another long pass and brave Canada's Wonderland for a few hours.

Toronto Day 39

2009-07-10T20:20:00.007-05:00

An ok day...plans are in place for discharge on Tuesday and we are all very antsy to get out of here. Our flight is booked, and hopefully the oxygen is all arranged. I had a few people working on it today at the hospital, so it should all be a go. Our flights leave close to the same time, so we will be able to travel to the airport together. We are flying home on different airlines, which is too bad, but at least we are going home! Well, ok, we are technically not going home...we are going into hospital back in Winnipeg. That should only be for a couple of days though, to get everything arranged for home. At this point, though, that will be so much better than here.

The team tried to increase Noah's feeds to 8mL today...I was not happy. Yes, Noah's poops look "glorious" (in Dr Wales words...yep, we get quite excited about nice looking poops around here), but Noah has not been himself these past couple of days. The retching has increased tremendously and he has not felt like doing much...no bum scooting down the hallways. This is Noah saying "slow down!" And there is no rush to get to full feeds (which I found out today is at least 50mLs!!). So we went back down to 6mLs and are increasing his Domperidone to try and get the retching under control. We also increased the glucose in the TPN again as there is still no weight gain, so we had to give up another hour of freedom. Since Noah is connected 20 hrs to the feeding pump anyways, being connected an extra hour to the TPN pump really doesn't make much difference.

We got out for a couple of hours this afternoon and walked to the Hockey Hall of Fame. (No, not my first choice of activities, but we got some free tickets and thought it could pass some time). It didn't hold the kids interest for long, but they did enjoy touching the Stanley cup.

Toronto Day 38

2009-07-09T20:31:00.007-05:00

Medically, not a whole lot new. We didn't move up the feeds today...just giving Noah time to settle with the 5mLs. He just wasn't quite himself today. His wound infection is still draining some pus, although it's improving, but we won't be stopping the antibiotics yet. Plans for discharge are still in the works...just dealing with Air Canada's medical desk again...uggg...always such a pleasure. I really wish West Jet supplied oxygen!!

Some race car drivers from Laps for Kids came to visit the kids today which was a neat experience. The first group in the morning...

Then there was a second group in the afternoon. Noah was happy to get out of his room for a while, but he started screaming when one of the drivers turned on the car and reved up the engine.

Some playroom pictures with Joshua in his usual position...

We got out for a couple of hours this afternoon and hung out in the park...

Then we finished off the day with a visit to see Tails again (the usual Thursday evening play).

Toronto Day 37

2009-07-08T22:08:00.003-05:00

We were able to get Noah out on a pass this afternoon and so we decided to give the tower another try. There was only a 30 minute wait this time, (and I think we actually waited much less than that), so we went up.

The kids got a huge kick out of the glass floor. Noah loved crawling around it too!

Noah, sulking, after being scolded for pulling hair... Medically an ok day...alot of retching this morning and evening, so the feeds are staying at 5mL and we are adding Domperidone to the mix of meds. This should help his stomach empty faster. So now we are giving one drug to increase upper GI motility, and another drug (the Loparamide) to decrease lower GI motility. Interesting combination...but, whatever works! We also got Noah back down to the gym for more therapy today. He definately tired quickly, but he did well with some walking and standing practice.

Plans for home are in the works, hopefully for early next week!

Toronto Day 36

2009-07-07T20:45:00.006-05:00

A good day today with some good progress made. We moved up to 5ml on the feeds tonight, so hopefully we won't have to increase the TPN again. We also discussed getting home next week. Sounds like we should be able to make that happen, although Dr Wales would love for us to stay and work on feeds here. He did say that if we stayed he thought we could make quicker and perhaps more progress here. Plus, in his own words, for his own "academic purposes", he'd love for us to stay. I think if it were up to him, we would never leave! Really, we have just had enough...we have made good progress, sorted out some issues...it has definately been worth it, but we feel like we can do the rest from a distance. So the plan will be to continue to work with the team via telemedicine. We just want to get home and have some summer to enjoy out of hospital.

We were able to get Noah out on a pass this afternoon to go to the Royal Ontario Museum. It was fun for a couple of hours, although we all have to say that we enjoy our Manitoba Museum more. A nice break though and Noah was thrilled to be out.

Toronto Day 35

2009-07-06T20:29:00.004-05:00

A long day at the hospital. We did finally increase the feeds this evening to 3mL/hr which is going well. Other than that, not a whole lot going on. Noah's weight is still at a standstill, and so we have increased the lipids in his TPN again. If that doesn't get us some weight gain we will have to increase the glucose again, which means losing more time unhooked from the pump. Hopefully if we can get his feeds up, then we can stop increasing the TPN calories and start some decreasing of the TPN instead.

We have been talking to the team about trying to get home soon. As much as I know they want us to stay and work on feeding, I think I will go nuts here waiting to get to full feeds. Now that they know Noah a bit, hopefully we can get a plan together to get back home in the next couple of weeks and continue this process at home.

Toronto Day 34

2009-07-05T20:34:00.007-05:00

A better day today...likely because I got out of the hospital most of the day! Brad spent the day with Noah while the kids and I ventured to the zoo. It was a beautiful day and lots of fun, plus I got to try out my new camera.

Things with Noah are status quo...nothing new to blog...no news is good news, right??

I've add pictures to the last couple of posts.

Toronto Day 33

2009-07-04T21:08:00.004-05:00

I think I have officially been here too long as my frustration level is very high tonight. Nothing huge, just annoyed by all the little things that don't get done the way I want them to...when it takes 2 hours to get all of Noah's nighttime meds and hookup done...when rounds get done at 10pm...just one of those nights.

Still at 2mls with the feeds, but we did get rid of the daytime oxygen today. I need to take a new picture of him as his face is now officially tube free! Noah's incision started draining a whole ton of fluid yesterday...today it was officially declared a wound infection. We swabbed it and started some IV antibiotics this evening. Hopefully we can clear it up quickly.
This afternoon we took a walk to the CN tower, but it was a 90 minute wait to go to the top. Guess a Saturday afternoon in July is NOT a good time to go. So we have promised the kids we will go back another day this week. We ended up riding the subway around for a while instead...since for us Manitobans, the subway is a novelty.
Joshua was glued to the window...
Tomorrow we are off to the zoo, while Brad hangs out with Noah. I'm looking forward to a day away from the hospital.

Toronto Day 32

2009-07-03T21:03:00.005-05:00

Stuck...

At a standstill with the feeds...stuck at 2mLs (yes, a whole 2mls an hour) since Noah continues to dump. Guess he just wants to show the team exactly what brought us to Toronto. The Loperamide dose was increased in the hopes of some improvement, but apparently it is one of those meds that works really well for some kids and not so well for others. So far Noah seems to be falling in the latter category. Back home we would have just accepted the dumping as we have so many times in the past and increased the feed as long as Noah was comfortable. But as the team here says...this is not tolerating a feed...what is the point if it's all going through and he can't gain weight?? Interesting that here they are far less willing to push Noah than back home...thought it would be the other way around...very thankful for this.

Still stuck on the daytime oxygen too. And still needing the 5 litres at night. Not too concerned about all of this...it's just Noah's chronic lungs taking their precious time to recoup. The CCRT has finally signed off though...they were happy enough with his respiratory status to stop coming around.

I took the kids swimming this afternoon while Brad stayed with Noah. It was nice to get out for a while.

Toronto Day 31

2009-07-02T21:03:00.002-05:00

An ok day...other than the continued respiratory stuff (oxygen, ventolin and secretions). Physio got Noah out of bed this morning for a while, and he did manage to play a bit, but got frustrated, wheezy and tuckered out very quickly. Definately not his usual self yet, but we are getting there. We got rid of the morphine infusion this afternoon...Noah was a bit jittery with some withdrawal, but has done well with just tylenol.

Feeds are still at 2 mls as Noah has already started his usual dumping (the feeds seem to just go right through him), and a bit of retching as well. We have started Loperamide (Imodium) to see if this will help slow down his gut a bit.

The kids and I checked out the hospital theatre this afternoon...yep, this place even has a movie theatre. We saw "Imagine That"...cute movie which we all enjoyed. Tomorrow we may try to do a bit of sightseeing.

Had to take a picture of Noah's roadmap posted by his bed. Thought it was rather cute...the nurse's way of keeping track of all his tubes...

Toronto Day 30

2009-07-01T21:10:00.007-05:00

Happy Canada Day!!

Another wierd night for Noah, needing 5 litres of oxygen again...hoping this is not a new trend. But during the day he does well with the .5 litres on nasal prongs. I was hoping to get rid of that soon, but he continues to show that he is not ready to be weaned. Overall a good day for Noah with a bit of a decrease in secretions and ventolin use, but otherwise very little progress. Not because Noah wasn't ready, but with the annual change over of new residents/med students today and the holiday, things were at a standstill. Yep, we always dread being in hospital on this particular day. Although the team tried to prepare for today, somehow none of the orders they left happened...very frustrating. So Noah is still on the morphine infusion, meaning he had to stay on the monitors, although he certainly doesn't need the morphine anymore. And no increase on his tube feeds as we had planned yesterday. Glad some of the team will be back tomorrow. I am amazed at how Noah is moving around already...kids are just so resiliant. He is itching to get disconnected from some tubes and be able to get out of his room.
Lots of Canada Day celebrations at the hospital today. I was surprised and impressed at the party they put on, considering how our children's hospital becomes a ghost town on holidays. The atrium was set up with stations...face painting, t-shirt painting, pictures with princesses, crafts, cookies, ice cream and lots of toys for all the kids. Home Depot was even there doing woodworking projects. Unfortunately we didn't get Noah down since he was still on the monitor, but it kept Kailyn and Joshua entertained for a few hours.

Toronto Day 29

2009-06-30T20:21:00.010-05:00

A good day with slow and steady progress. Noah had a bit of a wierd night, needing 5 litres of oxygen through his CPAP. But we are down to .5 litres during the day now through nasal prongs. Although, a rough afternoon with the lungs again...ventolin every half hour for a few hours and again SO much secretions. It seems that those lungs do really well in the morning after the night of CPAP, but by afternoon he starts to struggle a bit. So thankful for the CPAP to give his lungs a rest each night. He is still a bit fluid overloaded which is part of the lung issue, so more lasix today to try and get him fluid balanced. The team is still quite confused as to how Noah's respiratory status seems so closely linked with his tummy off suction and feeds started. Oh yes, did I mention that we actually started feeds today?? Just a trickle of 2 mls an hour through the J tube, with his G tube open to vent/drain, but so far so good. And the NPO sign is off our door! Baby steps...but it's something. I expressed my apprehension about pushing feeds again, and I was reassured that we wouldn't be "pushing", but rather Noah would tell us what to do. And they have no intention of taking away the TPN if Noah can't gain weight on whatever amount of formula we manage to get into him. Makes me feel better as last time we pushed Noah so hard, and went so downhill. I refuse to lose all the ground we have made with his weight.

Morphine is almost weaned...by tomorrow he should be off the infusion. This will be nice as it means he can be off the monitors too. Still very low energy, but in time that will come.

Brad and the kids have arrived safe and sound...it is very busy now, but so good to be together again. A month is just far too long to be apart. Noah was quite thrilled to see everyone, although he didn't seem to sure of Joshua with his new haircut (even I can't get over how different he looks!). Thank you, Alison for the welcome packages for the kids, and for the gift cards you brought last week...you have been so good to our family.

Toronto Day 28

2009-06-29T20:53:00.003-05:00

We seem to have made it over the hump and Noah was back today. Much less pain and many more smiles. We got him sitting up for short periods and he is looking very well. Still lots of respiratory stuff with wheezing and secretions, (lots of ventolin, suctioning and a couple doses of lasix) but we were able to move out of the constant care room and back into our old room. CCRT continued to follow him closely today, but we are all much happier with the way he looks. We took his NG tube off suction today, and again had a huge increase in secretions and suctioning. This has the team scratching their heads, however, we decided to leave him off suction and see if things settle down. Tomorrow the plan of the day is to start a trickle of feed into his J tube.

Tomorrow it will be 4 weeks since we came. The plan was that 4 weeks was the longest we would be here. Now it seems as if we are just beginning. The bright spot is that Brad and the kids are on their way and at least we will be together.

Toronto Day 27

2009-06-28T20:24:00.002-05:00

Post-op day 3 and recovery is slow going. Still alot of pain for Noah, requiring his morphine infusion plus bolus doses. Still some respiratory issues, and the ICU team (CCRT) is following Noah closely, coming up 2 or 3 times a day to assess him. Lots of secretions and wheezing today requiring lots of suctioning and ventolin. No one is in any rush to get him out of the monitored room at this point, so we are there for another night. I think Noah's CPAP has been our saving grace, allowing those lungs to recoup at night and getting him through these first post-op days. He spent alot more time awake today and I even got a couple of smiles.

The team is hoping to get Noah off the constant need for suctioning his stomach now that his stomach is able to drain. Today we tried taking Noah off the suction to his NG tube, however he was miserable with much more secretions. Back on suction he went for now and we will try again tomorrow.

Brad went home yesterday and will return with the kids tomorrow evening. Can't wait for everyone to be together!!

Toronto Day 26

2009-06-27T20:46:00.002-05:00

A bit of a rocky start to the day with Noah having had a rough night. Pain management has been our issue of the day. It's this fine line of controlling Noah's pain, and yet not sedating him to the point of respiratory problems. After increasing his morphine infusion again, we seem to have a better handle on things now. The afternoon was much more settled and Noah spent most of it in and out of sleep. He did have a few awake periods...tried to sit up at one point which caused him incredible pain, but when he'd relax he was quite comfortable. The team decided to keep him in the constant care monitored room another night.

The ICU team continued to follow him throughout the day and were quite happy with his progress. His lungs are improving and his last blood gas looked great. Some if his bloodwork is still a bit wacky so we started a potassium phosphate infusion to bring up his levels.

Hoping for a restful night.

Toronto Day 25

2009-06-26T21:29:00.001-05:00

A better day today. The night on BiPap was enough to turn Noah's gases around and avoid reintubation. This morning he was taken off the BiPap and has done well all day just on oxygen through nasal prongs. With the respiratory stuff settling down, he was moved out of PICU to the constant care room on the ward. Still running the morphine infusion, but even with that he's quite miserable with fevers on and off during the day. This evening he is looking very settled back on his CPAP, his temp is down, his TPN has been restarted and his kidneys have kicked in again. Praying for a quiet night.

Brad heads back tomorrow, and then him and the kids are coming back Monday evening. Once again our needs have been provided for. West Jet Cares for Kids Program donates flights to families of Ronald McDonald House to help keep families together. So the flights next week are absolutely free. Thank you so much West Jet!!

Happy 7th Birthday Joshua!! We love you so much and wish we were with you today. Can't wait to celebrate with you next week.

Toronto Day 24

2009-06-25T23:48:00.003-05:00

Surgery day...where to even begin...I will see how much my exhausted mind is able to recall...

By 7am we were down in the OR waiting room...Noah finally went in around 8:30am. He was in the OR for 6 hours. During that time I had a couple of visitors which was nice, and then at 10am Brad showed up. Yes...total surprise...a huge thank you to all those involved in getting him here for today. I was very happy to see him and have him here for today.

The actual surgery went well (other than a very difficult intubation) and our surgeon was very pleased. Opthamology got their look at his eyes, which looked fine. A full fundoplication was done, and he was able to take down the old stoma, untwist his stomach with no need to do any resecting of the pyloris. This was definately good news and he now has some working plumbing. He took down alot of old scar tissue and some adhesions to his liver. (Apparently his liver is very large, but is not "sick looking"). He placed a new g-tube and separate j-tube. Then he performed a Ladd's procedure to reposition Noah's malrotated intestines in his abdomen. By 3pm, Noah was brought down to recovery room, and after a bit of effort, they were able to extubate him right away. So the plan was to watch him for 4 hours and send him back up to the constant care room on the ward. But Noah had different plans...he started spiking temps, having some fluid issues, and of course, those pesky lungs began to act up. After a few scares in the recovery room, with some major desats and some visits from the Critical Care Response Team, it was decided to watch him there a bit longer with his CPAP and see if he'd settle. By 10pm he was still working to breathe and his gases were looking progressively worse, so he was admitted to PICU and started on Bi-Pap. I was actually quite happy to get him to PICU as I feel he is alot safer there right now. Between that and his morphine infusion, he is looking more settled, although his gases are still not improving. His chest xray is showing a possible aspiration pneumonia on his right side and a bit of lung collapse. So now it is just a "wait and see" game.

Toronto Day 23

2009-06-24T21:39:00.000-05:00

A very long day today in hospital prison. Noah was being his usual cruddy self this morning...well on the transplant unit, and with H1N1 flu rampent, this calls for high alert. So, although I tried to convince the nurse that this was "typical Noah stuff", she sent an NPA, which meant Noah was put in isolation. The only thing worse than being in hospital is being in hospital under isolation...especially when my very active boy who is quite used to our little routine of walks and playroom doesn't understand why suddenly we can't leave the room. Plus everyone was getting nervous about the surgery scheduled tomorrow if Noah was actually brewing something. But the rapid viral test came back negative, so isolation was lifted and tomorrow is still a go.

We have also added number 6 and 7 to the list for tomorrow...

6. Opthamology will be taking a look at the back of Noah's eyes (a way to check for metabolic diseases). Thankfully they have agreed to do this while Noah is under anesthesia (for anyone who has seen this done, you will understand why I am glad Noah will be asleep!).

7. A skin biopsy may also be added to the list to test for MPS diseases if metabolics is in agreement. This is still up in the air.

We also discussed Noah's line access a bit more, as I brought up my confusion with what we had heard back home to what we are hearing here. It seems that this is still a question mark. The team explained that the ultrasound cannot determine for sure how accessible those vessels really are, although they did show definate narrowing of his major vessels and some clotting. Further contrast studies would need to be done. But he did not think that it was the very dire picture that we were painted back in December. So it seems that this is all still unclear. Hopefully this surgery will help us decrease Noah's dependency on his line.

Please keep us in your prayers tomorrow. No matter how many times we have done this, it is never easy.

Toronto Day 22

2009-06-23T20:25:00.003-05:00

Today we were finally able to sit down and have a long talk with the surgeon. He had a cancellation on Thursday, so we have a new OR date of Thursday, probably at 8am. He has the whole day cleared for Noah. This is the detailed plan...

1. Create an incision, take down the old stoma and figure out how to fix his stomach and pylorus (this may involve the removal of part of the stomach and pylorus...a Gastroduodenostomy), and reconnect it to his duodenum. This is the big question mark and will dictate how long Noah will be in the OR for. But he needs some working plumbing if he is ever going to have a chance at feeding.

2. Redo Noah's fundoplication (the wrap around his stomach to keep him from refluxing). He may only be able to do a partial wrap since his stomach is so tiny (and may be made even tinier if he has to remove part of it).

3. Close up the old G tube stoma and create a new G-tube stoma that we will use for venting and draining Noah's stomach (Gastrostomy).

4. Create a separate J tube stoma (Jejunostomy) that will be used for feeding directly into Noah's jejunum. This is something we have wanted for a while, but our surgeon back home has been reluctant to do. But with Noah's failures to GJ feed, Dr Wales feels it is necessary.

5. Possibly take muscle biopsies in the bowel as there are some diseases that cannot be detected on the surface biopsies that were done last time. This will be Dr Wales judgement call depending how things look in there.

It's alot to do all at once, but there is no way to move forward from this point until this all gets done. It's tough to take the leap though, when he looks so good off TPN. There will be a PICU bed available for him after the OR in case they decide not to extubate him right away or if he is unstable in any other way. Otherwise he will go to the constant care monitored room again.

Thank you, Kim, Ernie and family for the care package in the mail...couldn't have come at a better time! Also thank you to Aunt Hilda & Uncle Dennis for the Tim's card, and to Mom & Dad for the Subway card. Those should keep me going for a bit!

Toronto Day 21

2009-06-22T21:54:00.002-05:00

Today was a long day spent at the hospital. Still tweaking the TPN...Noah was gaining weight over the weekend, but with the increase in lipids, his triglycerides are now too high. So the lipids have now been stopped altogether, until his level goes back down. And we had to increase the glucose, which means we are slowly losing our hours of freedom. We had to go back to 16 hours of TPN today. This still gives us a full 8 hours line free, but it is tough to give back those wonderful hours off the pump. We also started seeing some blood again from his stomach and his ph was dropping. So we've increased his pantoprazole dose once again.

And we finally have a plan...

Biopsy results today revealed nothing. Although I am told this is good news, (and I figured nothing would show up), a part of me was hoping for something to be revealed. Sometimes a definate answer is better than no answers at all.

So, the new plan is for surgery on Friday. As to what exactly Dr Wales will do...I have some idea, but will get more specific details tomorrow. And after surgery, we are to expect to be here another month or so. In light of this news, we have decided that our family cannot be separated for that long. So we are going to try to get Brad and the kids here. Still working on the financial aspects, as it is not working out to use our airmiles. But I miss them terribly and cannot imagine another month or more without them. Since school is ending, the timing is good. I'm still working on getting my head around settling in here for the long haul and giving up yet another summer. Praying this will all be worth it.

Toronto Day 20

2009-06-21T20:10:00.008-05:00

Today was a much nicer day...hot and muggy! I can't get over how muggy it is here. Never knew that about Toronto. We had a pass once again, and after a nice Fathers Day brunch at RM house, we set out for Riverdale Park.

What a beautiful little gem of a place this is, right in downtown Toronto! A pretty little park along the river. And right in the middle of it is a little farm open to the public (the very original zoo). The best part is that it is absolutely free...yes, Toronto actually offers something for free! Noah loved the animals...

Happy Fathers Day, Brad. We miss you so much...wishing we were all together today. Thank you for being such a wonderfully commited father, despite all the challenges. Love you lots!!

Jamie & Erik, so sorry I'm missing your visit...such bad timing.

I'm happy to put the weekend behind me and get on with things. Tomorrow we need a plan!!

Toronto Day 19

2009-06-20T20:29:00.002-05:00

Very little to blog about today. It was a rainy, gloomy day, so even though Noah had a pass this afternoon, there was little we could do. I am not brave enough to venture on the bus or subway with Noah and the stroller, so we just came back to RM house...did laundry, watched TV...nothing too exciting. We did walk to the mall for a bit during a break in the rain, but it was far too overcrowded with people. Hoping tomorrow is a nicer day.

Toronto Day 18

2009-06-19T21:00:00.000-05:00

More physio today...we are trying to pack in as much as we can while we are here and before surgery. My photographer Heidi was still here this morning, so more pictures to enjoy...

We were able to get out this afternoon for a while, which always helps. Heidi has gone back home so it's just Noah and I again. Thank you so much for spending so much time here with us, Heidi. Although we had lost touch over the past few years, we were able to just pick up where we left off and had a really great visit.

Nothing much happening at the hospital. Noah's weight is still an issue. He has still been slowly losing weight since we got here. The team had decreased the glucose in his TPN in order to give us more hours off. (The high glucose content couldn't be given over such a short period of time without running into blood sugar issues). So they have slowly been increasing his lipids to give him more calories. However we are getting to the limit of the amount of lipids they want to give him (too much lipids and we will start running into liver problems). Right now it is a fine line of trying to keep his freedom, and yet still get enough calories in him for growth. As much as we are enjoying Noah's new found freedom from pumps during the day, growth trumps freedom...we have added another hour of TPN back so he is running 13 hours. We may have to add back more if the weight continues to drop.

No biopsy results yet...hopefully Monday will bring results and a plan. The team is trying to negotiate OR time for next Friday, but as of yet, it is not confirmed. (Although we still don't know what exactly the surgery will entail, the plan is to block off about 5 hours.) If we can't get OR time, then we will likely have to go home as our surgeon will be away for a couple of weeks after that. That would mean a return trip back in a few weeks once we have a surgery date. I'm really hoping that surgery can happen while we are already here and settled, with a place to stay.

Toronto Day 17

2009-06-18T20:19:00.005-05:00

It was a good busy day today. Heidi came to stay yesterday evening and it was so nice to have some company to pass the time today. Physio did a session with him in the morning. Heidi went picture crazy and I ended up with a ton of great pictures from his time in the gym. Noah had a great time, and especially enjoyed walking with the bars. He does a great job of walking along the bars all on his own.

In the afternoon, Noah had another gym session with Occupational Therapy. Once again I am amazed at how much they can accomplish in a session. The tire swing was a huge hit...

Toronto Day 16

2009-06-17T20:01:00.003-05:00

A rainy, dreary day here. Not much going on. Noah had a skeletal survey done this afternoon, which meant x-ray pictures of every bone in his body. This was suggested by metabolics as some diseases can be detected from changes in the bones. Not fun for anyone as it was a long time of holding down body parts while he screamed.

Other than that, the day was quiet with very little to blog about.

Toronto Day 15

2009-06-16T20:49:00.002-05:00

Can't believe it's been 2 weeks already. Time is certainly starting to drag. The plan was to start some tiny feeds today. But Dr Wales is away, so the surgeon who is covering for him came to have a look at how we could thread a tube into Noah's jejunum. He could not figure out exactly where the 2 holes in the prolapsed stoma are, and even if he were to find them, how to know which hole is which. So the whole idea got canned. I was actually quite relieved to not have to mess around with feeding as I hate to rock the boat with Noah in such a good state. But now it really feels as if we are sitting around, doing nothing at all. I hate this waiting bit.

We went out on a pass this afternoon...went for a walk and enjoyed the beautiful weather. Wandered around the huge Eaton Center mall, but with no money to spend, not much to see. One of my old friends from Kitchener, who came for a visit last week has offered to come stay with me for a couple of nights. She is coming tomorrow night and I am really looking forward to the company.

Toronto Day 14

2009-06-15T21:26:00.009-05:00

A long day at the hospital today, with very little happening. Genetics came by to do an assessment and they have some plans of further testing that they would like to do. They also did another literature search and found a new case of 12q(15-21.2) deletion that was reported in 2008. Alot of similarities to Noah...cleft lip/palate, less severe feeding issues than Noah's, small size, developmental delays, and pancreatic insufficiency was reported. So they are recommending testing Noah's pancreatic enzymes to see if this could be an issue for Noah as well (pancreatic insufficiency causes issues with the breakdown of fat...this is something that has never been completely ruled out for Noah).

Tomorrow we are going to start playing with some feeds. We are down to 12 hours on the TPN (just to clarify, Noah is still getting the same amount of TPN that he was before, we just run it at a higher rate and squish it into 12 hours). He is acting quite thirsty (sucking on everything) by the end of his 12 hours off, so we did some bloodwork tonight to check his kidney function and make sure he's not getting too dry without fluids for so long. We won't have those results until tomorrow. Noah has actually lost a bit of weight since we got here, likely because the team decreased the glucose in his TPN, as they don't like to run such high amounts of glucose. We are now slowly increasing the lipids (fat portion) of the TPN instead, but so far no weight gain. So more tweaking still needs to be done.

Disney came to visit today and brought each child a stuffed Mickey. With our love of Disney, this was a highlight. Noah loved Minnie Mouse and kept trying to grab her nose. A nice break in the day.

Noah doing some physio with the cute little walker they found for him. He is actually starting to take steps with the walker and is very proud of himself... I've added some pictures from yesterday as well...

Toronto Day 13

2009-06-14T20:31:00.003-05:00

Today was a better day. At least we didn't wander aimlessly and no more nude bikers. I figured if we were going to spend the day walking, we should at least have a good destination. So we walked all the way to Woodbine Beach Park and Ashbridge Bay. It was pretty ambitious, and took a good hour and a half of brisk walking just to get there, plus alot of walking around the park. So the walk home felt very long and the streetcar looked mighty tempting! But we made it and as always, Noah loved it.
Not exactly sure what this week will bring. The team was talking about perhaps trying some very small feeds into Noah's jejunum. Since we can stick a tube directly into his jejunum, with no pyloric to navigate through, it's pretty easy to do. Although until the biopsy results come back, no one is willing to push much in the way of tube feeds. So it will likely be a pretty quiet week.

Toronto Day 12

2009-06-13T20:27:00.002-05:00

Noah was right back to his perky self today, and since it's the weekend, we were able to have a pass for the day. We literally walked the streets of downtown for hours, without really getting anywhere. It was a very lonely day...not much fun wandering around by ourselves. We wandered through Chinatown and then went to check out Kensington Marketplace. It was not very pleasant...overcrowded with people and we could barely move. Then as we were crossing a street, suddenly we found ourselves smack dab in the middle of a huge group of nude cyclists. Yes, apparently it was world nude bike day or something to that effect. It was not a pretty sight. Sorry, didn't get my camera out for that one!

I am missing my kids so much...I wish they could be here. (Although I am glad they missed the bike spectacle!).

Toronto Day 11

2009-06-12T19:59:00.010-05:00

Success!

Well, sort of...

Success in that Noah came through this morning with flying colours! No matter how many times we've done this, there's always that moment when my stomach drops and my heart lurches as I hand over my son to the OR nurse. But I felt confident, with Noah in such good health going in, that he would do well. The "before" picture in the OR waiting room...

He did prove difficult to intubate, so he is still having a bit of bleeding from his mouth as they had to manipulate around in there. But he was a dream to extubate. The "after" picture in recovery, doped up with morphine, but still determined not to miss a thing...

He went to the constant care monitored room after recovery, but after a little nap, there was no holding him back. I convinced the nurse to disconnect the monitor a bit so Noah could play. We figured if he could scoot around the room, he must be okay! When Dr Wales came to do his rounds, he had a good chuckle at his patient in the monitored bed. So by evening he had kicked us out and Noah was settled back in his old room. Since he spends the night hooked up to his CPAP and sat monitor, no one was too concerned.
His ear tubes went in without any issues. They found a raging ear infection in one ear so he's on antibiotics for the next few days. Guess that explains why Noah has been pulling alot on his hair by that ear. The scopes showed some interesting findings. They discovered that Noah's stomach is completely diverted or blocked in half. He actually has 2 holes coming out of his stoma. I will try to explain this as best I can...

When they threaded the scope down Noah's esophagus, it went into a very small stomach and then right out of his stoma (the first hole), instead of continuing on into his duodenum. The surgeon said suddenly they saw something blue, weren't sure where they were, and then realized the camera was sticking out the hole, looking at his gown. His fundoplication is also completely unwrapped (we had suspected it was at least partially failed). Then he has a second hole in his stoma that they were able to thread the camera through, which goes into the other side of his stomach and directly into his duodenum. His pyloric is nonexistent (for some reason it has stretched wide open). The stomach tissue looked good though, so the pantoprazole has helped to heal the ulcers.

They then did a scope from Noah's lower half. Despite the strange position of his large intestines, they were able to get the scope through. There were some ulcers in his colon area, but otherwise no obvious findings. Biopsies were taken throughout the intestines and stomach, No skin biopsy was done, as metabolics didn't have all the information from Winnipeg, and weren't ready to commit to that. Oh, and in the midst of it all, Noah seems to have developed an allergy to the regular clear tape they use here. He had a piece on his back and the area is now covered in welts.

So what does all this mean for Noah?? Right now everything hinges on the biopsy results, which will take a week to come back. And I'm praying that they will help shed some light on everything and give us some answers. If the results come back showing a definate malabsorbtion disease, in which case Noah will always be TPN dependent, then it is not so important to fix up the mess that is his stomach. The tentative plan would be to close up the stoma holes, and create a new hole strictly for venting. But if the biopsies show that he has potential to absorb, or if they come back with no answer at all, then we will need to forge ahead and try to fix the plumbing in there. The plan in that case would be to redo Noah's fundoplication, fix this stomach diversion, try to reconstruct his pyloris (this may not be possible in which case the surgeon would remove part of Noah's stomach and duodenum and then reconnect them), and then create a new G tube stoma, and a seperate J tube stoma. Yep, it's alot...it will be a major event.

After discussing this all with Dr Wales today, he said to me "Now this is why I refused to do telemedicine with Noah". Touche...yep, can't argue with that...would have been a tough one to diagnose over the phone. Despite our balking at coming here, if we had not, we would probably never have discovered this about Noah's anatomy. So I am thankful for where we are today.

After all this, Dr Wales has left the decision up to us. We could go home once the results are in with recommendations for our surgeon back home. Our we can stay and have him do the surgery. A tough decision, as I so desperately want to be at home, or at least closer to home in our own hospital. And yet...not such a tough decision. We have built a trust here, and I have no doubt that Noah is in the hands of an expert. Wanting the very best for Noah, we feel that it is here, with a leading surgeon in this field and a whole team of experts. And so the plan is to stay put and continue to see this through.

Toronto Day 10

2009-06-11T19:53:00.004-05:00

9am...

That's the magic time for tomorrow. We saw ENT, Anesthesia, Metabolics and GI today, so everything is a go. Because of his lung and airway issues, Noah will go to the constant care monitored room for the night after surgery until the anesthesia has worn off.

Metabolics may add a skin or muscle biopsy to the list tomorrow but they are still waiting on information from Winnipeg regarding the testing Noah has already had done. Noah had a skin biopsy done over a year ago to test for a Mucopolysaccharidoses (metabolic storage) disease after having high MPS levels in his urine. The last I had heard, the freezer that the sample was in had broken down, so his sample had to be thrown in another freezer and now could not be removed (ok, don't ask me why!). Then I heard that they could no longer find a lab to do the testing they wanted....and on and on it goes. So I brought up the issue yesterday and I'm hoping that they will pick up the ball here and get us some answers. Metabolics has already made some suggestions for a skeletal and eye assessment.

We spent some time with physio this afternoon. Both OT and PT have seen Noah alot already since he has been here which has been so helpful. They have been working lots with mobility issues (standing/walking) and have done a very thorough assessment. I wish we could have therapy a few times a week like this at home. But hopefully I will go home with some good ideas to help with Noah's very tight muscles in his legs and hips.

I also had some company this afternoon and was finally able to meet Alison (who brought the gifts yesterday) in person. Thanks for stopping by...it was so good to meet you and a nice distraction in my day. Noah has been enjoying his new Baby Einstein book.

This evening Noah & I went to watch Tails in the Bear Theatre. Every Thursday evening a group of staff and volunteers put on a musical that one of the doctor's wrote. Noah really enjoyed it and I did too. It was very well done and alot of fun. I couldn't help but miss the kids, thinking about how much they would have loved it too.

Please pray that tomorrow goes smoothly and brings us some answers.

Toronto Day 9

2009-06-10T21:02:00.005-05:00

This morning we did a RMR test. Basically, this test measures the amount of oxygen and CO2 levels that Noah breathes out. From this, the amount of calories that Noah burns while at rest (his resting metabolic rate) can be determined. Noah had to remain still under a hood for a full 10 minutes for the test to be accurate. Oh, and he also couldn't cry, because then he'd be using up more energy. I was sure this test was going to be a total bust. Couldn't imagine how Noah would stay still for that long. But when the woman arrived to do the test, Noah was still sound asleep. So basically we whipped his CPAP off, and quickly stuck him under the hood. In his half awake state, with Baby Einstein on the TV, he actually managed to complete the test!! I'm curious as to what the results will show. The rest of the morning was spent in the playroom, where Noah discovered the clown (A Leeboo) who came to visit...who blows bubbles, sings and plays the harmonica...Noah was absolutely captivated by him!

We are still continuing to increase Noah's pantoprazole (Protonix) dose, as his stomach ph is still acidic. But the bleeding is much improved as is his stomach comfort. The big question will be whether we will be able to get this IV drug for home use back home. We have tried in the past, but have been unable to get it approved. However, the doctors here are adament that Noah needs it, and it is quite obvious that he does, considering the change in the color of his stomach secretions. Something that will have to be sorted out eventually. We also decreased Noah's TPN another 2 hours today, so he now gets a full 8 hours off the pump. Since no more tests were scheduled for the day and Noah was unhooked, we were allowed to have a pass for the afternoon. But because we are still waiting for a few specialties to come see Noah, we were given a pager so that the ward could page us back if needed. That meant we couldn't wander far, but we spent a relaxing afternoon taking a walk and hanging out at RM house. A company brought in dinner to the house today (which happens a couple of times a week) so that was a very nice treat. And, no, we never did get paged back.
When we got back to the hospital, there were gifts waiting for Noah (and for Kailyn & Joshua too). A friend that I got to know on the internet through our wish trip planning came by. So sorry we missed you Alison, and hopefully we will still have a chance to meet sometime. Thank you for the gifts. Noah was thrilled with all his Tigger loot!

Toronto Day 8

2009-06-09T20:20:00.012-05:00

In the words of our surgeon "and the plot thickens"...

Based on the results of yesterday's barium study, surgery on Friday will be a bit different than originally planned. The ear tubes will still go in, an upper and lower GI scope will be done and biopsies taken. But Noah's stoma cannot be closed right now as planned. Noah's barium showed that he has a blockage of some sort between his stomach and his duodenum. No barium from Noah's stomach ever made it out of the stomach during the test. Our surgeon isn't quite sure what is going on there. The Coles notes version is that he's thinking perhaps a combination of previous surgeries and this latest prolapse has closed off his pyloris. This could explain his increasing retchiness and his inability to tolerate much time off his NG suction. But since there is no way to know what exactly is happening or what will be required to fix it, the surgery on Friday will be exploratory. Our surgeon will figure out the lay of the land in there, leave the stoma open so as not to obstruct Noah's stomach completely, then wait for biopsy results to decide the best course of action. The barium also showed that Noah's large intestines are mostly on his left side. They take some strange turns...so his anatomy is a bit different, but it shouldn't be affecting his ability to tolerate feeds.

This was all explained in great detail to me today, with elaborate diagrams. Each day Dr Wales has come to see us, sat down with us and spent a great deal of time talking and answering questions about everything that is going on. Have I mentioned how very impressed I am with him and his team? How nice it is to feel that our concerns are validated and our thoughts are important? To feel like they are looking out for our whole family, not just Noah? It is really a welcome change. So, yes, we are glad that we have come and feel confident that if there are answers to be found, they will find them.

Not much happened today. The second tube they put in Noah's jejunum yesterday came out overnight, (no surprise there, as nothing was holding it in), so there are some tests they are unable to do right now. ENT, Genetics, Metabolics and Anesthesia have all been consulted. However, we didn't see any of them today, so hopefully tomorrow we will meet some of them.

Mostly we are in a holding pattern...putting in time...waiting for Friday. Noah has been busy cleaning all the hallway floors with his little toushe (no, you don't want to know how dirty these hospital floors really are!), and showing off his cuteness to everyone. He is already developing a special relationship with the housekeeper who brings in her mop for his daily entertainment (he's always had a thing for them). While I am bored silly, Noah is perfectly content here...basking in the constant attention.